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  • HildeAL

    ostomy nurse

    By HildeAL

    First meeting with my ostomy nurse after the surgery, the 16th of March. I’ve made a list with questions for her. I’m curious with the Irrigation procedure, when can I start? I’m preparing to move back home again. I’ve lived with my parents since the surgery, but it’s not an ideal situation, I miss living closer to the city. So I hope I’ll be home during this week. But it stills hurts when I’m walking; it feels like I have open wounds in my stomach. Mentally I’m down at the moment. I have mixed feeling about my new colostomy. I’m glad that this has given me a new freedom in many ways, but I just hate having a bag with poo on me. I think it’s disgusting. Sometimes I could just wish this was not my own choice, so I could just be angry with the surgeons and nurses when I felt like it.
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  • MarkP_AUS

    12 Months on

    By MarkP_AUS

    Well it was 12 months on the 20th April since I had my little spouting friend installed. It has been quite a roller coaster ride. My current health status is 1. ileostomy is fine with little bag troubles (I am lucky with that). 2. Crohns active causing pain and possible cause of the partial blockages i currently have, mouth ulcers come and go depending on the Crohns activity. 3.Staph infection in the anal area which has not heals since original op, under treatment which seems to be working but slowly. I have returned to work again with a VAC pump on, luckily my work is good with my medical issues. My family are happy to have me home again after this last 8 week stint in hospital. I am really happy my wound is healing as the 1 and 1/2 hrs it takes to change it is a real pain in the butt LOL.
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  • LesaMarie

    Hi everyone!

    By LesaMarie

    New to the forum. Had an ileostomy on 12/12/2012 which is temporary. Having a rough time with it. Skin is stripping all over and ostomy bag won't stick at all. I have to change the bag several times a day due to leakage. Running out of options. Home health nurse discharged me but thinking I need the nurse back. Any support, ideas, thoughts on how to get through this? I am an emotional wreck and feel embarrased to see friends or go out in public.
    • 9 comments
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  • Joseph

    Hi everyone,

    By Joseph

    Hi everyone, Eight months have past rather quickly since the day of my life-saving operation to remove my diseased intestine. I couldn't be better! I've had my ups and my downs which could be expected but I'm now living life to the full. Previously I suffered from Crohn's disease but now the 'suffering' part has vanished. I'm perfectly normal, aside my ileostomy pouch. I'm currently on placement with a large company that manages the trunk roads in Scotland, Bear Scotland. I'm doing Administration and I'm very happy there. They have been kind enough to facilitate my needs and place me on a training course (SVQ Administration) which will boost my C.V to a great extent. It's only a couple of months until I start temporary-employment, messy weekends expected! Here's me and a close friend, I'm the one in the blue shirt.
    • 8 comments
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  • Alice

    Coloplast two piece samples

    By Alice

    Yes, finally I received samples from Coloplast. Two piece system, Yay, I have been looking forward to checking out this sample because it has the snap on locking plastic rings. The samples are three pouches and three flanges'. They are clear, but that's okay, I'm on vacation and don't have to concern myself if anyone would see.They are cut to fit as requested, with roll up velcro closure at the bottom that you open to empty from. There is also a nicely kinda thick flap that will be good support when in use. They also have an added velcro dot to use to tuck the complete velcro closure up into which should keep it from sliding out when you move about. As well as poke or rub against the upper thigh. Day one, putting on the flange was a breeze, but I also asked for the cut to fit ones and they were slightly difficult to cut b/c my scissors seemed a bit to long. It was an easy fix but, little extra work in cutting them close enough to meet my size. The flange is a full plastic/adhesive mount to your skin, but it is also shaped differently then my usual Hollister one piece which is round and these seem smaller and somewhat oval. They hide nicely behind the pouch itself. Snapping on the pouch was easy and felt quite secure with the locking ring on the pouch. I tried removing it to see how it worked and it was no problem to push against the locking system and unsnapping it from the flange. Emptying was quite easy with the thicker flap, b/c it was an easy aim and nothing collapsed or stuck together where I had to use my fingers before to reopen the flap with other pouches. Day two, not feeling so well but all is great with the output and no leaks or feeling like the pouch would come off. Husband and I have been doing some painting and I have been kneeling and bending alot and my stoma sits right above my pants line so I am thinking if this doesn't make it come lose then I'm going to put in an order for these. Day three, I think I have a blockage within me b/c I am most uncomfortable and feeling pressure and bloating but the pouch system is working well. Day four, definitely have a blockage, so I called out of work but will continue to test the system. Day five, well the blockage has caused my stoma to swell so I removed the pouch and flange and will have to continue when things pass. Day seven, feeling much relief and the swelling has gone down. Things are still passing ever so slowly but I can put on a new flange and pouch and see how things progress. Day eight, I think the blockage has clear up so it's off to work to see how the two piece system does after all the stress the job will apply. Well today was a very busy day. Still feeling sore inside but no issues with the two piece system. Took the pouch off of the flange and managed a good rinse out and used a q-tip (suggested from a post from Clare, thank you) to take care of the details needed close to the stoma, and yup, I am sold....calling and ordering a 90 day supply of these today. Woo hoo, finally got a two piece I like.
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Our community blogs

  1. MarkP_AUS
    Latest Entry

    Well it was 12 months on the 20th April since I had my little spouting friend installed. It has been quite a roller coaster ride. My current health status is 1. ileostomy is fine with little bag troubles (I am lucky with that). 2. Crohns active causing pain and possible cause of the partial blockages i currently have, mouth ulcers come and go depending on the Crohns activity. 3.Staph infection in the anal area which has not heals since original op, under treatment which seems to be working but slowly. I have returned to work again with a VAC pump on, luckily my work is good with my medical issues. My family are happy to have me home again after this last 8 week stint in hospital. I am really happy my wound is healing as the 1 and 1/2 hrs it takes to change it is a real pain in the butt LOL.

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    I just found this site while looking for help. I am a retired Air Force respiratory therapist and cardiology technician. I will start with Olivia's story:

    Olivia was enduced on her due date because she was not moving enough and her heart rate was not properly excellerating with movement. She would not come out but when she finally crowned, the cord was wrapped very tightly around her neck several times and she couldnt come out any further. They has to cut the cord for her to come out which decreased the normal amount of blood a baby is born with. Because of this decreased blood volume the holes in her heart, (that everyone is born with), didnt close. She was put on oxygen but then put in the NICU, They infiltrated her liver when putting in a central line through her umbilical cord so she was jaundice, not new baby jaundice but sick liver jaundice. To make a very long, rough story short, she now has a pacemaker, a broviac line for TPN IV feeds, on hydrocortisone and levothyroxine, she has an illeostomy with stoma, and an ng tube because of her short bowel. She no longer needs her pacemaker and once its out they will reattach her bowels and take out the ng and broviac. At one point I was told to tell her goodbye because she crashed and wouldnt come back.

    Shes a very, very happy baby and such a joy to be with. At 8 months old she is only 22 inches long and about 13 lbs. She doesnt sit up and pretty much acts like a 5 month old baby. Her ostomy had been behaving nicely and never became irritated until this week. First she had a rectal barium study, I usually use cloth diapers but didnt want to ruin them with the leakage afterwards from her stoma so I used disposable. Then her ostomy bag started leaking and I was changing it up to 5 times a day, then her skin started getting really red and I took extra care with it but nothing helped. Now, today, I have changed it 10 times and am about to lose my mind. Try changing an ostomy bag on a kicking screaming baby while your 3 year old is whining "mommy mommy mommy!" The nurse said to use her tegaderm from her broviac kit to cover the red area and then place the wafer and bag over that. Well Ive done that twice within an hour and it doesnt work either. I cant use barrier wipes because it has alcohol and its painful enough already. I use the powder every time I have changed it but it doesnt help. It looks like a 2nd degree burn where the top layer of skin is gone and oozing.Poor baby is in so much pain but she is finally asleep and I dont want to bother her.

    I am overusing her supplies and will not have enough at this rate. She goes to a short gut clinic once a month in another state but it cant wait. I dont want it to become infected. I'd like to just take her to the ER and watch them work some kind of magic but I doubt that will happen. Right now I just wanna crawl into a hole. I hate seeing her in pain, and helping makes the pain worse, and then it doesnt help anyways.

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    Recent Entries

    loisw
    Latest Entry

    My stoma is really making weird noises tonight. Even at dinner. My hubby said he has never heard such strange noises. It's sorta whistling and popping. lol

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    i have never written a blog but after reading so many peoples stories i wanted to share mine. i will try to keep it short. i first started showing signs of crohns disease in oct2008 while deployed to iraq (us army) for O.I.F. (operation iraqi freedom). i was seen by the dr twice once in oct08 & dec08 while deployed. both times i was told it was a stomach flu or bug. i returned stateside 5th march 2009 but i only ate 1 small meal a day from dec08 to feb09 and i lost about 30lbs. i was diagnosed april2009 with crohn's disease. i tried every medicine out there (cimzia, asacol, remicade, humira, prednisone, and many more). i was in the hospital 6 different times from april09 to dec09 in three different states because of the army and doctors they wanted me to see (virginia, texas, florida). on 30th dec 2009 at 1pm est i had my first surgery and ended up with a permanent ileostomy. the dr said i had less than a year to live with out the surgery so not much of a choice. i have still been very sick since then. crohns has effected my other heath problems and caused more also. i have arthritis in both hips with a torn labrum in the ® hip, sacroiliitis in my back, depression, anxiety (i have a fear needles, hospitals, and new doctors), nightmares, glaucoma in left eye only (was temporary blinded in left eye for four days 30jan10 to 2feb10 because of the prednisone) and countless medical procedures and tests. i had my second surgery on 20th march 2012 because the crohns had badly infected my stoma and 6inches down in to it with various other problems and with out the surgery i had maybe a week to live before my stomach burst (it was nearly double its regular size plus i had scar tissue blocking my stoma). i am currently still under weight (35lbs under what i usually weight). i just started on humira pen shots again yesterday. because of all my health problems i use a walker or a cane sometimes to walk around but im in constant pain from all my health problems. i was 34yrs old when it first started now im 38yrs old and i feel like im 70 (no disrespect to anyone who is in that age bracket). i am married to the most perfect woman in the world and her name is amanda. she is my "rock" and what helps keeps me going and our whole family. we have 3 girls an 8yr old, 2yr old, and 3 1/2 months old. my wife and kids are what keeps me going and gives me a reason to get up everyday. i'm also a gator football fan which also helps to take my mind off of my problems. i try to be strong for my family and just take it one day at a time. just a short background on my health issues. i hope others of you who also has crohns are doing better than i am and hopefully yours will stay in remission. best of luck to all of you in ostomyland and may your days be pain free. go gators!

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    My Journey to where I am Now I had Ulcerative Colitis/Toxic Mega Colon in 2000. I saw signs like Blood in my stool when I was about 10-12 years old but Didn't tell anyone then I never saw it again for quite some time So I thought nothing of it then at the Age of 20 I got really sick was throwing up waste and my Stomach was distended so my wife made me go to a walk in Clinic to be seen the Doctor told us that my Stomach was full of fluid and sent us to the ER where they had an Infectious Disease Doctor waiting on me then we were told I needed Surgery he asked if we knew any Surgeons our response was no So he said I know just the one for you that's where it began I was admitted to the Hospital ICU and they I had to have an they ran all kinds of test had cat scans Xray's the Cat Scan only showed that I had 6 different fractures in my Large Intestine then the Xray showed the hole in my Large Intestine So the Surgeon came into into the ICU Room and said I needed Surgery within the Hour which was an Exploratory Laparotomy I was in Surgery for 7 in a half hours and had all of My Large Intestine removed except for the last 15Cm's afterwards the Surgeon came and told my Wife that I only had a 10% chance of living I was on a Respirator for a week they also told my Wife to make Funeral Arraingments and asked her if she wanted to have the Respirator removed and she said no the Nurses in the ICU Unit paged the Surgeon and told her I was getting worse and she told them she could not open me back up I would die on the Operating Table so a few Hours later they Paged the Surgeon again I told her your Patient started to turn around at this time and we don't know why she told them I know why it was because she had gone into the Library of her home and Started Praying to God about me so I ended up with a Temporary Ileostomy was In ICU for 2 weeks and a week in a regular A Roomhad to relearn to walk again once I got home then the Surgeon Invited us to her Church that sums up Surgery #1. So in early 2001 I started seeing bloody Mucous from below was sent back to see My Surgeon who had done my Surgery and she did a colonoscopy and found the last 15Cm's of my Large Intestine was infected with Ulcerative Colitis so I was referred to a Different Surgeon since they didn't want to remove everything since I was so young they felt having a J pouch was a better option something they couldn't do in town so I was sent 100 miles from home to have a new Ileostomy created and have Ileoanal Anastomosis done (J- Pouch) Surgery was told to come back in six weeks but had no Insurance and thought I would just keep a permanent Ileostomy.Surgery so I went from 2001-2005 with no problems other then the prolapsing Ileostomy # 3 Was sent back to the Surgeon 100 miles from home since I had a large Insisional Hernia and the ostomy wasn't working correctly so he could just fix the hernia and reverse the Ileostomy. Surgery # 4 2010 had creation of Ileostomy by original Surgeon do to Anal Stritures that were not fixable so Surgeon left the J pouch in tact and just created the Ileostomy to provide relief and ability to pass stool but she only cut a small Insicion across instead of the length of the original Insicision which required her to do 2 hours of adheshion repair and Suture the new mesh to the old which created a lifting restriction an disabled me but had to hire a lawyer to get My Social Security Disability. until I was able to get Insurance to cover the Surgery to remove the J pouch and Anus I was having to have the J pouch Drained every 2 weeks in her office by her doing a Flexsigmoidoscopy to remove the Mucous since I had no control below that went on for just under a year. Surgery #5 was just done Sept of 2011 to remove J-Pouch and Anus and also had to cut midline so had to redo Hernia repair that was done in 2005 plus more Adheshion repair took close to 5 hours to do this Last Surgery hopefully it will be my Final Surgery Hope my Story helps somebody. John M

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    Sevensins
    Latest Entry

    So yeah this wont strictly be about "colostomies" more about my SB. Today i looked the old Spina Bifida site i had up, i reactivated my account and was greeted by a "latest announcements" post. This said that STILL eighty percent of unborns with Spina Bifida are being terminated, Spina bifida isnt a totally unknown condition and there is plenty of info out there yet medical proffesionals ask mothers to "consider there choices" when having a baby with SB, now what makes this personally shocking for me is once long ago my mum was put into this position even told i would not have any quality of life etc as have many others that i have met, all fully functional members of society, it just make me so sick to my stomach!

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    pat ellis
    Latest Entry

    Hi All just like to say a little about how i ended up looking at this site

    I do not have a stoma, we have a stoma, my husband is 56 years old and had surgery on the 14th december 2011, after discovering an agressive cancer in his bladder and prostrate, yes it was a shock as it all happened so quickly, they removed his bladder, prostrate, ducts, uretha tubes and his appendix, he is now fitted with a bag, at the moment it is ok, but would like to be able to ask questions of someone when i need to, i say we have a stoma because i feel it has happened to both of us, my husbands name is Ronnie and he has been amazing through out this

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    Hello everyone, I am new to this ordeal and simply looking for support and ideas.

    I am a little over a week out from my surgery. At first I cried non-stop for three days merely at the thought of having this bag attached to me. I had a couple of great friends that reminded me that I am alive and feeling better than I have in months. I decided to get over myself and be as positive as I can about it all. I have a colostomy that is reversible but the doctors doubt I will ever be able to do so. It is all rather surreal with having advanced ovarian cancer as well as a colostomy.

    I just wanted to introduce myself and say thank you for this site. I have read quite a bit already and have found GREAT ideas and comfort. Thank you and nice to meet all of you that deal with this.

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    LesaMarie
    Latest Entry

    New to the forum. Had an ileostomy on 12/12/2012 which is temporary. Having a rough time with it. Skin is stripping all over and ostomy bag won't stick at all. I have to change the bag several times a day due to leakage. Running out of options. Home health nurse discharged me but thinking I need the nurse back.

    Any support, ideas, thoughts on how to get through this? I am an emotional wreck and feel embarrased to see friends or go out in public.

  2. 2012 I hope it brings everything that is possible for each and everyone of you.

    We all live in hope and try rush our lives forward to the next operation or possibility of being well or as i used to call it (Connected),

    Thankfully my time did come on the 13th of December 2011 and my bowel is re-connected and so far although still in some sort of pain/discomfort everything is going very well.

    Dont ever give up when your feeling so low "REMEMBER ALWAYS" there will be someone here in Ostomyland no matter what time of day or night and chances are they are going through a simular situation as yourself,i found when i used to come on here i was so down in the dumps but then after talking to others or reading posts & blogs My life was not as bad as i was making out and it gave me a spring in my step.

    Hopefully my story on operations connected to my bowel are over,but one thing for sure its not over for me on visiting Ostomyland and trying if possible to give something back to the people who visit here.

    Remember always YOU ARE NOT ALONE

    Love & best wishes to you all

    EVAN xxx

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    Aup!

    I am Kirsty. I had Colitis for 6 years and can't wait to be free of this crappy disease I have had an ileostomy since April 2011 . I am a bit of a newbie here but kind of nervous as I am getting my barbie bum on Monday hopefully! this will be the 3rd time I've been in for op but cancelled every other time, so I'm hoping third times a charm, plus it means I can wear my new pj's (a little treat to myself for being brave LOL) I don't even care now that I have got to wear the sexy hospital gown and paper knickers, It is defo not a look I can carry off and what is the point of paper pants? Hopefully this stay will be less embarrassing than others as no stool charts or telling sexy doc's I'm happy I've only done 16 poo's (he was so gorgeous).

    I feel so much better for writing this rubbish down so thanks for letting me waffle on. It has made me realise that I will be healthy for the first time in years and my life won't be ruled by toilets and I will be saving an absolute fortune not having to buy so much bog roll (which I had brought shares because I would be a millionaire by now).

    Kirsty x

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    Joseph
    Latest Entry

    Hi everyone,

    Eight months have past rather quickly since the day of my life-saving operation to remove my diseased intestine. I couldn't be better! I've had my ups and my downs which could be expected but I'm now living life to the full. Previously I suffered from Crohn's disease but now the 'suffering' part has vanished. I'm perfectly normal, aside my ileostomy pouch.

    I'm currently on placement with a large company that manages the trunk roads in Scotland, Bear Scotland. I'm doing Administration and I'm very happy there. They have been kind enough to facilitate my needs and place me on a training course (SVQ Administration) which will boost my C.V to a great extent. It's only a couple of months until I start temporary-employment, messy weekends expected!

    joeystu.png

    Here's me and a close friend, I'm the one in the blue shirt.

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    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

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    Nomad18826
    Latest Entry

    I am approximately 1 year out from my surgery. This was due to a very aggressive form of colorectal cancer. The surgical procedure I had is known as an “APR”. Basically the surgeon remove everything from the sigmoid colon down. So as many of you know, I now have a bottom like a G.I. Joe doll!! Haha!! I have found that my attitude towards this change in my body is helped with laughter. I have told more jokes about myself and my condition to friends, nurses, even the doctors. They all laugh, and it seems to put them more at ease when they see that I can laugh at myself. I don’t do it to make myself feel better. I’m fine with the way I am. But over the past year, I found it hard for people to accept the fact that I am glad to just be alive. When you have to tell people about your cancer, or the treatments of radiation and chemo, It’s easy for them to feel sorry for you. Then when you tell them you have a stoma, well , that’s the topping. They seem to relax more with you when your attitude is jokes about it. So I came up with all kinds of way to make them laugh. Laugh at me, for being silly. Or just laugh when they see that they don’t have to feel sorry for me.

    I did the research. I talked to people. I knew what was going to happen and I knew that my attitude was going to get me and others thru this. The only surprise I had was the day after surgery. That’s when I realized my rear end was sewn shut. The surgeon came in to check on me and I asked him. “Is my butt sewn together ?” He said “Yes”. I asked “ Is this permanent?” He said “Yes”. I said “ Well alrighty then.” And laughed. That was the start of my laughing about my condition.

    I guess what I am trying to get across is that, No matter what happens, ATTITUDE is EVERYTHING!

    Laughter is also a great healing factor. Not only for your mind, but for the body too. SO if anyone has a joke about my condition that you would like to share. PLEASE, feel free to post it, message me or e-mail it to me. I would love to hear it. Maybe someone out there has thought of one that I haven’t yet. Hahaha!

    Scott

  3. Ken's Blog

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    Ken
    Latest Entry

    Hello, I am Ken and have recently joined the Ostomyland website. I have a Urostomy and Colostomy and am sure others are in a similar position.

  4. PhilEsgate
    Latest Entry

    Sorry to sound like I'm a constant complainer - I'm not at all really, but what else can you do. I'm simply fed up with being unable to do anything. I was always a very active, outgoing, do anything type of guy. But nowadays, just being sat here using my laptop is a total pain. Headaches are continuing from my neck and shoulder pains. My 2 stomas are both giving me jip. Constant diarrhea, which means the odd burst bag. Poor Mary is totally beside herself with worry about me and now with her being made redundant at the end of March from her part time job she's been loyal to for 7 years, is causing her even more stress. It's bound to take it's toll no doubt, but one can only hope that she is going to get the help and support that she deserves.

    The bloke from the coucil surveyors office came around today to do the plans to have the bathroom made into a "wheel - in" wet room, with a sunken floors to drain away the water and more hand rails to be installed, plus a Mira Thermostatic Electric shower with a long rail! - nice, whatever that is. God knows how much this is all going to cost, but he did give us a clue by saying that it won't be cheap. They did say that we will be getting a grant to pay for some of it if not all of it. Let's hope, because that's not all, I have to have a stair lift installed and a ramp to the front of the house to make it all wheelchair accessible. I just hope that I'm strong enough to be able to use it all by the time they eventually have done all the work. I'll keep you posted.

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    Well, here's the result of my ostomy nurse visit this month here in Seoul. As I suspected, I have a bad skin rash over about 1/3 of the skin around my stoma. It turns out that I had nearly every treatment supply necessary in my bag of ostomy goodies - just I didn't know how to use them. I purchased these products a couple of years ago, thinking I might need them, being in a foreign country. But I didn't really know how to use them.

    Here's what she has me doing. She called it "crusting". Apply a very fine dusting of the anti-fungal powder. Then spray that with the skin barrier spray. Dry it (I use a hair dryer). Repeat this process, building up three layers. Then use an alcohol-free stoma paste (this was something new - the stoma paste I had was in a tube and definitely had alcohol, because it stung like crazy). Finally apply the bag.

    I'm not so sure I really need the stoma paste - I haven't had leaking there. But instead, the "event" that would cause me to change bags prematurely these days was the skin rash itself. The skin would become so damp from the rash, that it would become un-stuck from the bag causing a leak.

    I'm doing better with this "crusting" technique, and hope to see the rash disappear soon.

    I too have had this problem for sometime and this is what I have figured out what to do w/ it to make it heal . I use a cloth or paper POST surgical tape cut in strips about 2 inches long and angale it around my stoma, after it has been cleaned and dried, and after using a no sting prep pad on the skin . It must be clean and dry for all this to stick. Then I apply my barrier , after being warmed w/ a hair dryer. I also connect the two peice pouch together before applying to my skin over my stoma. I hope this idea will help you, I have healed my skin, I tried the CRUSTING techque, but find that the tape works best for me... You can find the tape at the pharmacy in the states ! Resonable cost !!!

    I take Imodium to make my poop turd up... It works for me, and I know how miserable all this can make a person feel, and I hope this will help you and anyone else out there ! It is worth the TRY !!!! I have a permanent colostomy, for a year now...... GOOD LUCK !!!

    P.S. Sorry, I forgot to mention that I put at least two or three layers of the tape around my stoma !!!!!

    Source:

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    I'm 22yrs old and have had a colostomy for 8months now due to complications during the birth of my son. Its time for the reversal(November the 15th) and I'm really nervous anyone out there have any advice on what to expect???

  5. 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.

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    today has been another good day, no tears shed. wow i am soooo proud of me, these first 2 weeks have been hell and i know ive not found a magic cure either.

    i enjoyed my lazy day so much yesterday, ive never had a full day in my pjs before, hmmm should i have one more often????

    today i asked hubby to let me go to town with him to get some shopping, and yipeee i went. bloody hell it was hard going, im absolutely knackered tonight, and in quite a bit of pain, im a bit worried about this pain around my navel as it isnt getting any easier at all, i would tell my stoma nurse if she ever got in touch, im getting really angry about her flippent attitude, ive sorted out some sample bags from a company ive chosen today instead of the awful ones from the one the stoma nurses use, theyve rang me to confirm and they put other bits in too,

    im watching Benidorm over top of laptop and having a good laugh at some of the comments its pretty funny, i usually only watch CSI and Criminal minds but as the other half has that on i cant help watching what im laughing at.

    i cant seem to concentrate tonight for some reason, my minds blocked for some reason.

    today ive eaten, ive had a banana as everyone was telling me the other night to eat bananas, and ive had spuds and green beans for tea, so the most ive eaten since i came home in a day, oh and a slice of victoria sandwich which i enjoyed......well if anyone pops in, Hello to you and hope your well.........

  6. So today I came home FINALLY!

    I thought I would feel better when I was home, I don't have a problem with the ileostomy-it saved my little life! But in the hospital it was so easy to be positive, because i had been there so long, i was giving advice and telling people what to expect and that surgery was a good thing!

    Now I am home and face the prospect of wearing clothes (Jeans have been an issue, but we are shopping to rectify!) rather than jammies, trying to get input to a regular level rather than erratic and to actually deal with the thing. I have an ileostomy, yes, i poop on my tummy. Fine.

    So why was i convinced at the services on the way home that EVERYONE knew? everyone was looking at me, it got hot, it got fuzzy and before i knew it i was breathing in a paper bag. then everyone WAS looking at me!

    I guess after a month of feelng like i had the hang of this thing and being really high on life that im even here, it hit me. poof. This thing may not even be permanent-I wont know for some time i guess, but there is so much in my tiny mind rght now i could think of nothing else but putting it down. Maybe someone else had a similar experience to me? if i had read this before coming home, it would have made me feel better to know no one notices things, when my bag makes noise it sounds like im hungry and i empty regularly to avoid the mini bump or any possibility of leaking due to lack of room. Why should anyone else even care?

    Its a chiché but those that have a pdoblem dont matter, those that dont have a problem are friends for life.

    I have a bag...You got a problem? Then its with you...not me.

    Say hello to me world, and meet my bag-Bertie :)

  7. this is me :mozilla_frown: an this is my bowel :icon_twisted:

    I dont like telling people about my bowel disorder :mozilla_sealed:

    when I grow up I want to be an Inventor :mozilla_smile: so I will get lots of money :mozilla_moneyinmouth:

    I told my X friend (Tom)about it but he understood it wrong and told my girlfriend :mozilla_embarassed: But then I told her fully and every thing was fine

    PDT_Love_18.gif' class='bbc_emoticon' alt=':PDT_Love_18:' /> PDT_Love_03.gif' class='bbc_emoticon' alt=':PDT_Love_03:' />

    my girlfriend wants to be a teacher [smiley_book]

    (mums bit)

    This is Julian's first go at blogging. He has done very well!

    We are on the waiting list for Julian to have "Full Anorectal Assessment" which I think is anorectal manometery.

    Hope everyone enjoyed Breakaway (and Rach is better), looking forward to the August Breakaway!

    Rachel and Julian :mozilla_laughing:

  8. ant649
    Latest Entry

    So, I have been back from Barbados for 10 days now. I had a great time with wonderful highs and some lows too. As I have mentioned before, my best friend lives out there and it was great to see him agin and to meet his new wife, and see his new baby too, who I became Godfather to while I was there.

    That was a strange ceremony in that it was a happy occasion, and I was honoured to play the part that I did, but when Ralph made a little speech, he talked about how much he would have loved his father to have been there(he passed away some time ago) and he looked me directly in the eye and mentioned other loved ones who are missing. At this point, I couldn't stop the tears from rolling down my cheeks. Kim would have loved everything about Barbados. But, I know that I will still have these moments, they will always pop up and bite me from time to time, but I don't think I will ever mind. Because if dreams are like movies, then memories are films about ghosts. (counting crows).

    So, the highlight of my time away was going to the Cricket World Cup Final and actually being there when England spanked the Aussies. What a day. Got heat exhaustion for my troubles, which took me quite a few days to recover from, but I know better for next time.

    We drank so much water that day, but I don't think any of us went to the loo to pee, we just sweated everything out. And although I have had my Ileostomy for a very long time that doesn't mean I know it all. I ended up on a diet of crisps and coke to try and get back all my salt and sugars back!!!!!! Still, at least we won the cricket.

    So back here for a week, then I am up to Scotland for a week. Looking forward to that too. I haven't been up for a while, and as a regular visitor to my friends up there I have missed it. I don't think I have ever been up there in June though. So lots of very long days indeed. Hopefully the weather will be good.

    Ok, thats all from me for now. Thankyou for reading if you got this far and I hope you are well.

  9. MikeNZ
    Latest Entry

    If you've been wondering where I've been lately, I've had another fun spell in hospital after 2-3 months of intermittent seizures. Turn out I shouldn't have stopped the meds after all ...

    Found out late April that not only has my brain tumour come back, it's brought 2-3 little friends with it. It seems they can't operate, I've already had the max radiation & chemo only has about a 10% chance. In other words, I'm up f_smiley.giff_smiley.giff_smiley.giff_smiley.gif creek.

    The tumour in the lung has grown a bit too but doesn't seem to be doing anything daft - guess I'll find out at my next appointment early June.

    But wait, there's more. 2 days after my admission late last month I was moved to a two-cubicle room. Later that day the person in the other cubicle died - then it took a few hours to wheel them away ...

    The next morning I was feeling a bit brighter, so I got out of bed, looked out the window, what did I see across the street - 'Harbour City Funeral Home'!

    Oh, I nearly forgot, my hot water cylinder sprung a leak & had to be replaced. Cost me a fortune.

    The good news is that my gt-niece Ivy scored a goal in her first game of football, she's just recently turned 2.

    And my youngest nephew just got a job as a lawyer soon after graduating in law & political science - and I always thought he was quite a normal kid ...

    Oh and my hair has grown back - what was left of it.

    I'm on a host of drugs now and back under the beady eyes of the hospice, I even have a special buzzer that rings the ambulance if I start having a seizure (it works too!). My family are also keeping a close eye on me, bless them all.

    Please forgive any typos folks, my brain is still a bit scrambled and I'm feeling knackered.

  10. Vee's Blog

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    I am starting this blog in the hopes that some of my friends will pop in and share their lives with me and each other.

    I will start off by saying I had a very pleasant afternoon today as our camera group met for the first time this year. Our first meeting was to have been in January, but my friend Pauline who is the coordinator for our little group ended up in hospital having a stent put in her heart. And somehow we didn't want to have a first meeting without her there. Pauline is 78 years young. But today I noticed she looked just a bit frailer than usual. I hope she regains the strength and vitality she had before this heart episode.

    I have a little shudder to myself still when I think about the fact that I am alive...when I could so easily be dead.

    Cheers, Vee