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  1. Many thanks for the Birthday wishes. I did have a great day with family. I thought I should relate recent ileostomy experiences, they may be helpful to others. My surgery was 4 years ago and bag changes have varied from 1 - 4 days. However a few weeks ago I started having lots of leaks and I was changing bags sometimes 2 or 3 times a day. I have always viewed my stoma as something foreign and changed the bags quickly to cover it up. About 3 weeks ago I decided I must take a good look and I found that my belly around the stoma had changed shape and had a dip a third of the way round. I cut an Eakin ring in half, doubled one end over to copy the shape of the dip. I stuck that on and put a complete ring over the top, taking my time to make a good job. I have not had a leak since and the last 2 bag changes have been 6 days apart. Having a good look at my stoma brought it home to me that it isn't foreign, It's part of my small intestine which I have always had. So I have learned to like it, after all this arrangement has saved my life.   Best wishes to all   God bless Alan (paganini) 
  2. Hello....I have not been on this site in a few years. But have come up with a question and don't know where to get answers.  I live close to Portland in Oregon  State and had my ostomy about 7 years ago. Been very lucky and haven't had any major problems.  I have developed a hernia and went to Doctor who said he could do surgery.  But I had already read about many people who have had many, many surgeries to protect the bulge of a hernia.    So I opted to watch and wait .....because everything was/is working well.  No problems with bag coming lose, or pain or anything else.  But  I was told I could get a kink or blockage and may have to do an emergency surgery.  So far that hasn't happen. For which I am very thankful.   So where do I find the nurses that work with ostomy belts ,.    What title do they work under.....where hospital? Or how do I go about finding them or one or something lol   Sharri in Oregeon
  3. My stoma is flush to my skin, slightly, shallow retracted. The ideal would be a shallow convex wafer, but I like my flushable bags, and they do not make convex versions of the flushables. I am starting having granulomas around my stoma. I have heard that careful use of silver nitrate will eliminate them. Is there any alternative cream or some other sort of treatment ?
  4. Purple spot on stoma

    If it aint one thing its another. So after my post from yeaterday we all know Enrique was very active. VERY active, cleaned him up last night really well and went to bed. This morning I check him out and he has a purple spot on him, its not the entire stoma, it almost looks like a idk a little bag of purple, kinda swollen....what do you think, im thinking I had my wafer to tight. I go to the surgeon Monday at 11:30 do you think its ok to watch it and see what happens, or should i go to an er?
  5. Well this is my first ever Blog about anything EVER and I never thought it would be about having a colostomy. I think typing down my thoughts is going to help me heal. I truly believe I'm fine about having a stoma but actually who knows. It's too early to say. What makes me laugh the most is that the other day, I actually looked at a picture of a women's stoma in a leaflet and showed it to my partner. I actually said "I wish my Stoma was as perfect as that one." It was lovely, very healthy skin around it (not red raw like mine), sticks out the perfect amount (Mine is rubbish, sticks out a little at the top but is flat at the bottom) and she has a little rose tattoo next to it. It was perfect. A month ago I would of been looking through fashion magazines wishing I had a body like the tiny models. Hahaha how things have changed and so quickly. I'm really looking forward to having my haircut tomorrow for Christmas and I have a new outfit.Slightly baggy to hide my new "designer bag." I'll be giving my confidence a boast that way. But as for my stoma I think it needs plastic surgery!!!!
  6. i was recently driving and had to make a sudden stop to avoid a accident. the seat belt locked and tightened hard on my stoma.this was highway driving and had to make a sudden stop with speed at 60mph. i had to stop driving and catch my breath,when i got home i noticed i had blood coming from the stoma, this has snce stopped but my right arm and hand become numb. is there any nerve or reason that this could happen. it has been a few days now and except for skin damage my stoma area feels ok, but arm continues to hurt. .
  7. Bleeding

    Big G has a new problem. I'm going to have to get professional advice, but I wondered if anyone has any ideas. His stoma has started to bleed, on the outside, just where it meets the peristomal skin. He's on warfarin so he does bleed more easily - his blood levels (INR) are fine. I can't see why it's started to do this. There's no sign of any infection. The skin is healthy. His bags are pre-cut, and I help to secure them, so I know the stoma hasn't been trapped. He hasn't had any falls. The stoma itself looks nice and healthy. The stoma is prolapsed and he has frequent fluid build up resulting in a hernia. But none of these are new problems. I think the best person would be a stoma nurse rather than A & E. It depends how long it'll take to get an appointment though.
  8. 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?
  9. Hi all. Been having ulcer like wounds show up from time to time under my wafer. Previoulsy diagnosed by a wound care nurse and a dermatologist as being pyoderma gangrenosum. Now a different dermatologist re biopsied the wound and says it's not pyoderma and refered me to a different WOCN. Don't have much leakage, but am now thinking the problem might be pressure or plain irritation from the wafer. The wounds usually happen on the top half of the stoma site, probably mostly near the belt site. Have tried wearing the belt rather loose, but this doesn't seem to do much. Applying Triamcinilone, covered by calcium alginate over the wounds util they heal. Any ideas to share regarding products or procedures? Thanks
  10. 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.?????
  11. 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:
  12. 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!
  13. 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
  14. 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??
  15. Hello, I took out extra travel insurance last year (although i have insurance with my bank) in September for two weeks in Madeira, which was about ten months after my operation,I had no problems with my stoma,Iv'e back at work full time for six months and everything is fine. would you recomend I take out extra cover going to Spain in Septenber for seven days?
  16. Hi there! I can't believe how quick this year has flown. This time last year, I was a "master of the bag" - changing, cleaning, putting one of those sticky donuts on, applying the barrier with that tiny square of sponge, slapping on the flange, securing the bag.... I was like a ninja! Or maybe like a car mechanic. I would place all the tools of the trade in a line so I could whip the bag off quickly, and reapply the flange methodically before my little strawberry (as I called it) started being all upset on my leg. Sometimes I'd take off the bag/flange in one pull, and jump in the shower, relishing in the feeling of warm water around the shaft of my stoma, cleaning off the built up sticky stuff and making the red skin around the stoma base feel better. Heaven! I lived with my stoma for over three months. The first weeks I was like a hobbling old man, staples up my gut, learning slowly and without fear how to handle such a rude and primitive change to my body. After a while I learned to live with it. It wasn't that hard really, I knew it was temporary. I also knew it saved my life. How could I feel any animosity towards something which allowed me to live? I read a book about life in the 1800s. Many people died from ruptured intestinal issues back then. I had one mishap the whole time I was bagged up. I was moving something into my car... all of a sudden I felt wetness around my stomach. "Honey... umm I have to go to the house and see what's happened here!" I said to my girlfriend. The bag had pulled off the flange because the small clip got caught on the thing I was lifting. I went straight to the bathroom, a shower, a refit and a change of clothes fixed it and I was back on my feet. I always carried an emergency bag kit with a complete change or two. I never had to use it! I did however, have to adjust my trousers around the waist so the bag could go below my waistline. I went back to work and no one really knew what was going on! It was a strange feeling, like I had a special secret that only I knew about. I did on a couple occasions lift my shirt to show people when interest was high enough. People looked stunned. A large pink scar and a beige baggy thing was stuck to my gut. "Glad it's not me" they must've thought. I didn't care. I was alive! I'd been saved! I even had a job interview with my bag on. I was hoping to god there wouldn't be a silent moment when my stoma did its gurgling thing. It sometimes made some whacky noises! The "gassy bag" also happened on a few occasions. I would wake with what felt like a inflated hot water bottle strapped to my chest... the bag ballooning almost to the point of bursting. I made a joke to my partner that I may float out the window next time! Speaking of which, my girlfriend Victoria was an angel to me. I will never, ever forget how she helped me throughout the whole thing. I love her. I am indeed a lucky man! My stoma odyssey ended on the 6th of November 2009. I went into the hospital in the morning in a positive mood. After changing into a hospital gown I was wheeled into the anesthetic area and put under. I awoke and the stoma was no more, and it was time for my body to learn how to function again with the plumbing reconnected. That is another journey that I'll write about at another time! Hope you're happy and healthy! Graeme.
  17. Hey everyone.....I recently have developed a little tiny bump or wart like thing on the first I thought that I got the wafer too tight but it did not go away when I changed now I am freaking out that there is something really wrong with me !!!!!!!! any ideas ????? Vickie West Virginia
  18. Hey guys, sorry I've not been on for ages, I've been trying to rebuild my life. Hope ur all well. Sorry to seem cheeky but I was wondering if I can hear from anyone whose had to have excess scar tissue removed. I had a visit with my stoma nurse the other day as I am concerned that I am not tolerating much recently whereas after surgery I was tolerating much more. We came to the conclusion that its likely to be 1 of two problems, either a bug picked up from holiday or a blockage caused by scar tissue. I've had 3 major operations on the same site so I knew I was at risk of this but would just like to talk to people. Many thanks Xxx
  19. 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.
  20. 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
  21. Has anyone here from the UK ever bought, over the counter, silver nitrate sticks for the removal of granulation from their stoma? I have a large granulation which covers most of the bottom half of my stoma and a smaller granulation on the top. The fitting of my bag is becoming more difficult and the leaks more frequent. My surgeon said that sometimes a surgeon can do more harm than good and it is probably best not to attempt to CUT the granulation away, as this could result in having to reform yet another stoma. Meanwhile my stoma nurse is quite happy to treat the smaller granulation with the sticks but she is very reluctant to treat the large granulation, although she has treated it with what was left on the stick after treating the small one on the last two occasions. When I asked her if I could treat the large granulation myself, she said she didn’t think that I could buy the sticks over the counter. My problem is this. When my small granulation is gone, then the treatment to the large granulation will end, even though it is getting bigger all the time. Having a surgeon who is reluctant to operate and a stoma nurse who is reluctant to treat an ever growing granulation, I have no other option than to treat it myself. If anyone can give me any information about buying these silver nitrate sticks over the counter in the UK, I would be very grateful. Thanks. Take care all Cheers Charlie.
  22. 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
  23. It's Been A Crazy Month!

    I can't believe it's been a month since my last post. We have been going around and around on Charlene's stoma supplies, and what works best for her. And I mean AROUND and AROUND. We've been to see the stoma nurse again, we've changed to a convex flange, we've learned about "crusting" which is when you use stoma powder and no sting skin prep in layers to create a protective crust on the skin, we've had more coloplast samples sent, picked up some Hollister samples at the hospital and received some samples from Hollister's secure start program...and on and on. Right now things are quiet. Before this morning Charlene had a flange on for five days. Her skin looked so beautiful this morning when I changed her that I almost took a picture. Perfect. I changed her at 6:25 a.m. At 8:06 she called from school to say she was leaking, and again at 9:21 and again at 12:12. And then I changed her again at 4:45 p.m. Her output had changed to almost all liquid and was really giving us trouble. Also, we had run out of supplies (even after getting all of those samples) and were down to one-piece bags/flanges that we had gotten when she was first in the hospital in September. We actually had two really trying times this month with flanges leaking like crazy and trying everything under the sun to stop it. For now we are going with a Hollister convex flange, little or no barrier ring and no powder or skin prep (since her skin is so perfect). For all of you parents out there with kids with stomas...hello! Describing going through this as a parent as stressful is an understatement while the whole time Charlene just takes it all in stride. I am so thankful for her disposition. Anyway, that's what WE'VE been doing for the past month...hope all is well with everyone!
  24. Skin Trouble

    Is there nothing worse than broken skin around a stoma? I mean...what's a person to do? You have to put the flange on...but oh, it seems so impossible when the skin around the stoma is broken down. On Halloween night (late, around midnight) Charlene started complaining of itchiness around her stoma, and so we decided to change her flange. WELL. There was a part of her skin on the right side of her stoma that was completely red, bled slightly and was weeping. I was so disappointed. We think that this was caused by some liquid discharge she'd had earlier in the week which led to leakage and frequent changes. It also could be an allergy to the adhesive. This is Jason's theory, and I don't want it to be true, but I know it could be the cause. I just hate the idea of changing our whole system. Hate it. So, the night was saved by stoma powder. This after I panicked for a bit, called the wound care nurses phone, only to find there was no provision for emergency calls. I also called the pediatric nurse. She was good to talk to, but had no ideas for me. Meanwhile, I remembered the Hollister stoma powder, researched it a little bit online and decided to use it. Meanwhile, poor Charlene was falling asleep while her dad tended to her stoma while it was uncovered for about an hour and a half. She slept like a baby after we got her all packaged back up. Right now we're just trying to allow that flange to stay on as long as possible before we change it again. and on and on it goes...
  25. Visiting The Stoma Care Nurse

    Hi Everyone, Just want to report that our visit to the stoma care nurse, or wound care nurse, as we call them, on Friday, was uneventful. She thought Charlene's stoma looked great. This will always be a mystery to the nurses can look at the same thing that doesn't look quite right to me, and say, "Oh, that looks great!" Hmmmm.....I need more training, obviously. Also, we had the pleasure of meeting a new nurse from the wound care team, and she was fabulous. They all have their own tricks and tips and I love a new perspective. Charlene and I travel about an hour and fifteen minutes to the hospital where she had her surgery to go to follow up visits and to see the wound care nurses. Friday was no different. The drive to the hospital is becoming routine now, after a year and half of it (since her diagnosis), and we're starting to really enjoy our trips there. You see, the hospital is near where I grew up, so I'm very familiar with the area. Also, my son and his wife live there now, too. So, Charlene and I made a day of it on Friday, shopping for beads (she has a jewelry making habit I have to support!), and visiting my son (and his new puppy). The visit to the hospital was almost an aside. It was also quick and easy, and no charge! Since Friday, we've had to change Charlene's flange two times...once because things were just too itchy, and once this morning at 5:45 a.m. because of leakage. Before this we've had two great runs of six and seven days without having to change. Some success! That's it for now...Charlene is off to school. Gotta run her over to the bus stop.