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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.
    • 1 comment
    • 418 views
  • 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.
    • 8 comments
    • 680 views
  • Scarlet Moon

    8/9/2012

    By Scarlet Moon

    I've been thinking about starting a blog about life with my stoma, Squirt, but was concerned it might turn into a major whining session or have people respond by telling me how lucky I am and go into their saga or leave sympathy or hang in there comments. My goal is not to make this a pity party but to make info available. When I was healthier, I used to frequent ostomy forums and try to reach out to new or future ostimates to at least offer some support, but there's a lot of idiots in this world filled with rude and cruel comments. So I turned off comments and have no guilt about being honestly brutal about what it's like to be 38, and sick. . and sick of being sick. I've been an ostimate on and off for 12 years and my current stoma is permanent as of 3 years ago. I know family and friends try to understand, but until you wake up in your own dookie or experience a bag/wafer blow out, you don't really get it. It happens and you move on. I'm used to Squirt but do wish he'd be better behaved. After 6 bowel surgeries I am left with short gut syndrome and on TPN--fluids only. I should probably be grateful for that, but it's hard to remember when I'm on an IV for 12 hours and seem to go septic every 6-9 months. The last episode just about a month ago and it seems the accompanying pneumonia and lung nodules may be lingering. Time will tell. And in time, my tale will unfold.
    • 0 comments
    • 405 views
  • 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
    • 544 views
  • crystal

    OMGoodness long time no blog

    By crystal

    I can not believe I have not blogged since 2011. Let's just say life got busy and lots of fun! I do believe that since my last blog I met the man of my dreams and got married on April 28, 2012. We had a beautiful church wedding and went on a Carnival cruise to the Caribbean for our honeymoon. Luck for us that was before the drama of the ship getting stranded in the ocean. We do love to cruise!! I also have a great niece on the way in September. I am so excited since it will be the closest to us having a child of our own. My wonderful husband had never really seen me at my sickest point yet, but I do know he will handle it in stride when my Crohn's does decide to rear its ugly head again. He has had to carry me to the ER on a few occasions and he did great (thank goodness if not I'd have to send him to the curb). I have been having some wonderful signs that maybe my wonderful remission just might be over for the time being. I have noticed the sed rate climbing and I really do not know what the next step would be. I am already on the MAX dose of Cimzia. I will deal with that when the time comes. Just always have the wonderful irritation around the stoma and ugly marks from the perstomal pyroderma. Oh well it is the battle wounds that make us who we are! Glad to be back! Crystal
    • 2 comments
    • 363 views

Our community blogs

  1. Janet Mitchell
    Latest Entry

    Hi everyone!unnamed.thumb.jpg.82ac2393660102e402491d

    Long time between updates, I realize! Sorry about that! Charlene, who was diagnosed when she was 11 with Crohn's disease, in 2008, is a sophomore nursing student at the University of Vermont now! Her background: She had a temporary ileostomy fashioned on 9/11/09 and then a complete colectomy and permanent stoma made on 6/1/2010. She is feeling extremely well since her surgery in Nov. 2014, during which she had a small amount of small intestine removed and her stoma refashioned and moved to the other side of her stomach. She has had regular Remicade infusions every 8 weeks since then and these have kept her disease and symptoms under control. Her blood tests show no signs of inflammation, which is great news for her and for us.

    So, she's on her way to helping people just like herself! She's happy, healthy, and active!!

    Janet

  2. HildeAL
    Latest Entry

    just popping in to say that you're not forgotten, but I'm having problems with my computer at home. It can't take a lot of pictures and graphics, and that's why I have to save my capacity for things that are urgent. Is it possible to get access to this site through mobile phone or iphone? I'm considering buying an iphone soon, if I've got enough money...

    except for my computer problems I'm doing great physically. I'm working for the deafblind organization in Norway. I still don't earn my own money at the moment, it's still unpayed work.

    so how are you doing?

  3. State of the Community – September 2011

    Contents:

    1. Introduction

    2. The Community as a whole

    3. Promotion in the ranks! Congrats Sarah!

    4. The Message Board

    5. The Chat Room

    6. The Main Site

    7. The Ostomyland wiki

    8. Ostomyland at Conferences/Events

    9. In the Works for Oland

    10. Main Site Stats

    11. Main Site's Country of Visitors Percentage Stats

    12. Board Stats

    13. Records

    Introduction

    Welcome to the Ostomyland State of Play – September 2011 blog entry. This is a run-down of the various events, achievements and feature updates/changes/launches for Ostomyland in the last year or so, along with details of our aims/plans for Ostomyland in the coming months/year. The last SOTC posting was in June 2010 so I’ve quite a lot to go through, therefore I’ll get right on to it.

    The Community as a Whole

    Unbelievably its been approximately 15 months since the last SOTC address, and there’s been a lot happening at Oland Towers during this time. We’ve promoted a member of Team Ostomyland; attended our first (and not out last!) ostomy conference event; had a major redesign of the main site along with a huge update to the message board software on which you are reading this very blog message!

    And that’s not all, we’ve got plans in place for the future. Firstly, there’s the chat room re-launch next week introducing a new system which we’re hoping will make chatting a whole lot more friendly for our valued members. Speaking of our members, I’m actively looking for a support system which will allow people to seek our help over technical and account problems easier and with less confusion over who to message over which problems. There are some irons in the fire which I hope to keep stoking over the coming weeks.

    We've also welcomed a new staff member to the staff room. PaulineNZ's contribution towards welcoming the vast majority of new members and first time posters was both welcomed and valued and she was an ideal candidate to join the mad house of Team Ostomyland.

    For the community itself, I continue to be amazed at how great a collection of folks we have on our support boards; people who are willing to help total strangers with the most intimate of problems through the sharing of their own personal experiences. Over this 15 months period the community has automatically steered itself towards the direction of “support” posting, over “off topic” posting. Both are welcome of course, and encouraged, and I hope more off topic posting will develop over the coming year, but I never lose sight of the fact that Oland is here to offer ostomates support for their stoma and pouch issues and I’m very proud of the support our community offers it’s visitors and on a personal note, I’m very proud to be able to call a lot of our “regular” posters as my friend. And I’m sure Kathy feels the same way.

    Speaking of everyones favourite coffee maker admin.... Last year I was honoured to be nominated for the Ostomy Lifestyle (UK Charity) Volunteer of the Year award, as part of their 2009 awards. Well, I was delighted to see that in 2010 Kathy got some acknowledgement for all the hard work she does for the ostomy community both on and off line by being nominated for the same award. The winners announcements were made in early 2011, and sadly Kathy did not win either, but she lost to a very worthy winner who is responsilble for overseeing a support group with many thousands of pounds investment from the various ostomy companies every year. Ofcourse, Kathy has to do her part here on Oland with no money at all, so in my eyes that makes her a value-for-money winner. :D hehe

    Promotion in the Ranks: Congrats Sarah!

    I’m delighted to be able to announce that Team Ostomyland has had a promotion in its ranks. Sarah73, who has been helping to moderate a forum for over a year now, and did us proud by staffing the Ostomyland table at the Colostomy Association (UK) Conference recently, with Kathy also there. It was thanks to Breakaway founder, Julie Bastin (and fellow Team Oland staffer) that we were invited to the show, and for that I’m immensely grateful.

    Sarah has been promoted to Global Moderator which means she is co-responsible for moderating all the forums on the Ostomyland board, along with helping resolve member queries, and most importantly, helping us get the Oland invited to more exhibition events, as well as helping staff the table to promote the website, and most importantly the community itself. Effectively she’s been promoted to Junior Management, only one step behind the admins.

    I’ve been looking at the staff rankings and tweaked them to accommodate in Sarah’s new position. The ranks are now:

    Level 1: Welcome Wagon/Happy Helper – low responsibility, usually chat room members who actively go out of their way to welcome new members and guide them where necessary to the relevant section of the site, or even to other parts of the net where appropriate. Have no moderation or chat op'ing powers.

    Level 2: Moderators – Members who have accepted the responsibility of looking after one, or more, individual forums, making sure that all posts in their forums get a reply whenever possible, and passing any problems on to the admins when necessary.

    Level 3: Global Moderators (Junior Management) – Sarah73’s new role. Someone who does the same as levels 1 & 2 but over ALL forums on the board, and helps members with any account problems they may have. Also, a GM is someone who actively promotes the website & community out in the real world to help bring new members to the site so that the circle of member evolution can continue.

    Image 1: The Circle of Member Evolution - how members grow in confidence and become supportive of others

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    Level 4: Administrators (Senior Management) – Kathy and Me. We sit back, let everyone else do the work whilst drinking lots of coffee and watching telly, and reaping all the rewards from the praise Oland gets. Nah, not really! We’re always looking to promote the community offline, and try very hard to make Oland as good as it can be online, considering that this is only a hobby website which started one bored New Years Day after reading a computer mag article on making websites – i.e. we’re not professionals at support or technical stuff. This is not a job, we are not experts in any of this and are followers of the Indiana Jones philosophy – “I don’t know [what I’m doing]… I’m making this up as I go along!”

    The Message Board

    There’s been some big changes to the message board thanks to Invision’s latest version update to their message board software. Last month v3.2 launched, bringing with it a whole host of changes designed to make the board and its secondary features (blogs etc) as user-friendly as possible. The biggest change however has been in the redesign of the board’s main template theme (its look). The colours have been lightened, and the design brought more in line with current website design protocols. These changes have been very well received, with not one negative comment. In fact, we’ve been getting lots of positive comments from people who would normally not message us, which is great to see.

    Obviously, all these changes are nothing to do with us. The message board software is a program created by Invision, so all praise has to go to them and I have sent a message to their feedback department saying how well received this latest update has been received by our members.

    From our point of view, theres been very little done to the board’s structure or layout. A few forums have been merged, and some long dead & unused forums have been deleted. This has helped to try to prevent “forum overload” i.e. having a forum for every topic under the sun. In turn this makes the board’s home page seem more concise with a lot less down scrolling needed to browse it’s content.

    At the moment there are no real plans in place for the future plans of the board. I’m happy with it as it is, and so I’m going to just continue to patch it when Invision releases their updates, and maybe possibly try to bring some more life to the off-topic section which has gone very quiet. This might be because of the “hidden” member-loyalty-reward forums such as the 150BG getting a lot of the daily member “chit chat” talk these days.

    Speaking of the loyalty forums, because of the board’s focus switching more to support these days, post counts are not getting to the target levels for the clubs as quick. I don’t know what to do yet to try to level the playing field. The main choices are either reducing the post count needed to access the current loyalty forums (150 and 500) to maybe 25 and 100 respectively. Or… to open up new loyalty forums for those levels to act as stepping stones to the 150 and 500.

    Out of the two, the latter seems the fairest, after all the members in the 150 and 500 clubs earned access to those clubs by reaching those post counts, which is a great achievement. If I opened those forums up by reducing the post count access then it would diminish that achievement, and that would be unfair.

    I’m still thinking on this though, so it’s something for the future and not for the present.

    And I'd just like to state for the record that just because I've said this, it does not mean I'm unhappy with the clubs. In the past it's been intimated that I was, and thats totally not the case.

    The Chat Room

    The chat room is finally having an overhaul. We've used the same IRC system with access via mIRC and/or a java based web browser client since year 1 of the site. In fact our weekly meetings we're largely the reason that we became so successful until the popularity of the message board community over-took it.

    Over the years IRC has lost its popularity as the main chat format on the net. Nowadays chat rooms which are hosted directly on a website without the need for IRC servers and extra software are the norm. For example, Facebook's chat box among your friends etc. As a direct result of the drop in popularity in IRC the developers of the third party Java-based browser clients we've used has reduced and finally ceased. First our jPilot applet ceased development, and then the pjIRC client (which we're using now) ceased development. This means the devs no longer bought the necessary security certificates for their products, which left their product still able to be used but constantly giving out security warnings, which people had to ignore to connect to the chat with.

    This situation was scaring new chatters away from Oland chat. I'm 110% positive of that fact. And so, with the update of the board to v3.2. by Invision, as well as an update to their IPchat product, we've taken the step of announcing the closure of our IRC chat room, and the launch of our new IPchat room! There's a on the board already which covers what this means for all our chatters, be they Java/jPilot/pjIRC or mIRC users, so I wont go into all that again here other than saying the changeover date is September 14th, and from that date there is one way, and one way only to access the chat room, and that will be via the new Chat tab on the message boards menu.

    IPchat is powered by Ajax, which powers the Facebook chat plugins. It's incredibly fast loading, and smaller in download size. Most users wont notice it loading Im sure. And whilst it doesn't have all the features of IRC such as Stats pages and Pooh the bot, it has all the important stuff like ops, private messaging, ignore and so on. We had a test of the IPchat about 6 months ago I think it was, and it was very successful, and the feedback from that convinced me that it would help more new blood into the chat, and enable more people to enjoy reap the benefits of that.

    The Main Site

    The main site continues to play the part of being most peoples first impression of Ostomyland. With that in mind, I felt the site's look needed to look more professional and less bloggy - which is a hard task when i) we're not professional in any way shape or form, and ii) the site is powered by WordPress, the world's best known blogging software.

    In July the new look launched, and I'm pretty pleased with it. I'd still like to be able to ditch the over-all blog feel of the site one day, but in the meantime I am very happy with the simplicity of Wordpress for authors/articles writers. If I had the money I would invest in having a professional webmaster write a new look for the site to give it that AAA look and feel, along with a simple CMS entry submission system so Kathy and co can continue to submit articles without needing any HTML or coding knowledge (the #1 plus in WordPress' book, if you ask me!)

    Content wise, we've been delighted to welcome some more ostomy related companies to our Manufacturer's section, including Trio Healthcare who's products particularly impressed me personally after trying their samples.

    The biggest bug-bear that I have with the main site at the moment is that it's on a separate server to the forums, and more importantly doesnt have the forums built in to it. I've been looking at lots of "portal" add ons for the board which would allow me to integrate the main-site content on to "pages" within the board's package, but sadly either the software was utterly confusing to use, or just didnt do the job well enough and so look terrible. I'll keep looking.

    The Ostomyland Wiki

    The wiki had a large over-haul just before the launch of the last SOTC post, and since then it's pretty much sat there and done it's job. Because I've been working on other sections of the community I've not had the chance to do any major content additions in it, but it's on the cards as theres still so many pages we could write.

    On the software side of things I'd really like to change the Wikkia software to something else more industry-standard such as Media Wiki. Whilst I love the simplicity of Wikkia, and it's overall look and feel, I find it very frustrating that it has no in-built spam prevention measures such as Captcha random-letter-entry confirmation for comments and registrations. Over the last two months especially, the wiki has been victim to a lot of automatic spam-bot spamming, where a bot has managed to register an account and leave comments behind. After trying the only two "captcha" plugins community-authored for Wikkia and seeing that they didnt work, we've been left with no option but to disable user registrations and lock all pages to comments. That does kind of defeat the object of a Wiki, but considering that so far not one person aside from Kathy or myself have joined in with the Wiki's creation process, it's no major loss to the wiki or the site as a whole.

    Wikkia does have a v2 update planned for release late this year, or early 2012, so I'll give that a try then and see how things goes. Spam-prevention measures are promised for v2 so I can but hope the dev's deliver on that promise.

    All that aside, Im still pleased with the Wiki project. I believe we're still the only Ostomy wiki on the net, but I've not looked lately so I may be incorrect thinking that. But whether thats the case or not I'm still pleased with the 250+ pages of ostomy and bowel related content we have on there, and it makes a nice little side salad to the community forums/website main meal and serves its purpose well.

    Ostomyland @ Conferences/Events

    Late last year, we got our first ever table at an industry event. As mentioned earlier in this post, thanks to Julie B. and the CA we were part of their industry open day, and it gaves us a great opportunity to raise the community's awareness of our website and brand. Despite the fact we've been online 13 years now, there's many people who do not know of us, and what we do.

    Considering our table had to be designed, sourced, created and delivered in a little over a week, I could not have been more pleased with the look we achieved.

    Our new GM Sarah was at the event as was Kathy, and they got a taste for it (or maybe for the free sweeties... who can tell?!) So keep an eye out in the near future for more announcements about events we'll be attending as this is part of the Oland project that we really want to investigate further, and hopefully it will help the community grow further still.

    In the Works for Ostomyland

    Once the chat's relaunch is out of the way, the immediate "to do" planner will be clear again. However, that doesn't mean we havent got plans for the future. Most of them I've already discussed in this post, such as the conference attendance plans. However, one plan I've not really discussed yet, and is very high up the list of things I would like to do for the site, is the desire to have some form of standard contact procedure for people to ask us for tech or account help, especially now that there's more management staff who will be working on this side of things.

    The initial idea is a sort of "ticket" service. If anyone has ever contacted a software company for tech support then if you weren't directed to a forum to post, then chances are you created a ticket. The benefits of a ticket is that all level appropriate staff are alerted to the tickets creation. So lets say User A sends a ticket asking for help with tech support on the site, then his ticket would be sent to me and Kathy. If User B were to send a request for accounts help, then the ticket would be sent to me, Kathy and Sarah, allowing any one of us to step in and answer the queries. I'm thinking that this would give everyone a single, prominent/dedicated place to go for help. The ticket system would not be for ostomy support though. As that is peer-to-peer all that would still need to go through the board to the community members, as more than likely we (the staff) would see a huge increase in the amount of queries we had to deal with personally, and chances are we might not have the personal experience required to help that say, another member might have.

    So that's one thing I'm keen to try and implement in a way to improve the user's experience of Ostomyland should they ever require tech support on the site, or account support, or need to ask how to do something on the board.

    Another project I need to work on is actually nothing to do with front of house stuff, but is instead an updated FAQ section for forum mods and admins on how to do what on the board from the staff standpoint. ie edit posts, move posts, or thread, and rename threads, warn spammers, and so on. A lot of this has changed since v3.2 was installed so all their files need updating too. That will likely take priority over the ticket system project.

    Then theres just the main site content to freshen up, and the wiki to write a major update for, and the new chat room to promote around the net again and..... well, you get the picture. We've already done so much, but there's just as much still to be done... if not, more!

    Main Site Stats

    Oland been online: 4512 days

    Current Hits: 6,731,484

    Current Average Hits (01/Sept/11 to 08/Sept/11): 4054 per day

    Unique Visitors to Site (Avg per day – same timeframe): 1508

    Main Site's Top 10 Country of Visitors Percentage Stats (for Aug 2011):

    40.8%United States

    37.0%United Kingdom

    5.8%Canada

    2.6%Australia

    2.4%South Africa

    2.4%Italy

    1.2%Sweden

    1.0%Cyprus

    1.0%Philippines

    0.8%Netherlands

    Board Stats:

    Current # of Board Members: 3308 (8th Sept 2011) – Previous SOTC entries total: 2530 (Jun 2010)

    New Members since last SoP Blog: 778 (on 8th Sept over 15mths) – Previous SOTC entries total: 375 (8 months)

    Total Posts: 74724 – Previous SOTC entry total: 67816

    No. Of Posts since last SoP Blog: 6908 – Previous total 5880

    Records:

    Most board members online in one day: 74 – 01 August 2010

    Most board members online at once: 125 – 23 May 2011 (Awesome!)

    Key:

    Green = Broken/Increased since last SoP Blog

    Red = No Change/Increase since last SoP Blog

  4. Looking back at 2013. . . wow was it a doozy!! We had a lot going on with our family and I had quite a year from July to now. I had been busy as the summer began with landscaping and then in the blink of an eye, it all exploded! In May my BFF's dad had really started to take a turn for the worse and the week before Father's day, he was back in the hospital and it was touch and go for awhile. I just kept praying that he didn't pass that weekend. He didn't and while I heard he was doing better, what I didn't hear was when they planned to let him go home. It was always contingent on something or another so I had suspected he was either sicker than she could accept. Days turned into weeks and in mid July he passed. I had been busy doing heavy lifting outside and was not feeling well for awhile but assumed it was stress related and really didn't think much of it.

    That week in July was awful. The day after my friend's dad passed was my niece's birthday. And while there was excitement that she turned the big 10, it was also a difficult day as Lady, my beloved cockatiel had a stroke. I knew at that moment that he would be leaving me, but my family was not ready for it. We took him to the emergency vet and he had perked up a bit so I was advised to watch him and see. The next day he didn't eat and then he suffered a second stroke that night. The following morning, on Thursday the 18th my sister and I took him to the vet for the final time. It still breaks my heart to think about it. I had spent the night of the 17th with him on my chest, snuggled up in his favorite robe and said goodbye. He was with me for 24 years and I really wished I could have held him as he passed. Due to how they would have to put him to sleep, it was not possible. They usually gas birds for surgery so they gave Lady gas to put him to sleep then gave him an injection to stop his heart once he was sleeping under the gas. Taking him out so I could hold him would risk waking him up and could cause him pain in those final moments, so vets do not allow it.

    While it was awful and heartbreaking to have to take that final vet visit, in my heart I know it's what he wanted and that it was the right thing to do. He kept looking at me like "Why aren't you helping me?" And there was nothing I could do. He couldn't stand after the second stroke and all I could do was to give him peace. I loved him too much to let him linger or to face a cruel drawn out death.

    I came home from the vet and put myself together because my friend needed me. Her dad died. I won't deny my heartbreak but this was her dad. When I walked into the viewing room, she ran up to me and nestled into the crook of my neck and finally let go. As we sat on the couch and her hot tears fell onto my skin, I knew I was where I belonged. I had not planned to tell her about Lady until after the funeral but her fiancé asked about the feathered kids and once more tears fell. I know she was upset that I did not tell her, but I also know that she understood and would have done the same for me.

    I think on that day we both cried for ourselves, eachother, and then to just cry to cry. The following day I went to the funeral, wake and on the way home I saw puddles of water on the road. I walked in the door after a very long day. .and long week. . low and behold. . no power. I just sat on the couch and cried. It was unbelievable bad luck but I was grateful that the storm had not taken down another tree.

    The following few days I worked on prepping my yard for a delivery of glass mulch. I was schlepping dirt and doing hard physical work. It was therapeutic and kept my mind off of the past week. It was no surprise I was sore and tired--after all I had a week from hell and was grieving. I came in hurting and just exhausted. I had moved about 400lbs of dirt that day so I really thought I needed a hot shower and to lay down for a bit. I was watching a movie and all of the sudden I started to shiver. I knew that that meant but I was too cold to move so once the rigors stopped, I forced myself to take my temp and it was over 102. I took a few aspirin, called my mom and sister. Told them I had a fever but it was 9pm. I'm taking Tylenol and will go to the ER in the morning. No point in going at this hour when I know I'll be admitted and they won't have a room anyway. It was a great plan until I sweat through several shirts and my fever spiked almost 2 degrees within an hour. Not surprisingly, I quickly changed my mind and went to the ER knowing I was once again septic.

    After a week of tests and cultures etc, everything came back negative but I was still fighting a fever. It would break but still hover around 99. I was sent home. I was anxious to go home as my glass mulch had been delivered and I was anxious to finish my project. I went back to life as normal as possible and I got a phone call telling me to call the floor doctor. I was unable to contact him as was my family doctor. when I went in for my follow up with my GI I told him I still had this lingering fever and that the hospital called and said something finally turned up on the culture but the floor doctor told me he could not disclose what that was. Honestly, I tried to pull it from him. My GI sent me to ID. Got me in the next day I think. I saw the same doc I had seen in the hospital for ID. She flipped through the chart and was furious that they did not call her to tell her that the cultures were positive and not only were they positive, they were positive for acinteobacter. I think I might have spelled that wrong. . .but it's not a concern. What WAS a major concern was that I was very sick. Once more I was sent to the ER. This time with a note saying I was positive for acinteobacter and that I was to be place in quarantine. I spent another week in the hospital. This time they removed the port and we did the whole 9 yards again. I was one sick gal.

    When I came home, I had a message from Facebook from someone I dated years ago. I don't use facebook so I was really surprised to see this contact but I really had no reason to avoid it. I responded after a few days of thinking about it--I flat out asked him what he wanted. Turns out he's in the middle of a divorce and he wanted to start to get to know eachother again. Chris and I dated over 20 years ago and the last time I saw him, he and his wife were having difficulties. They were separated but had kids so they worked it out for the boys. Since then, they added a daughter to their family and a lot of resentment. He has full custody of the kids and we have been dating since September. The divorce will be finalized in a few weeks and for now we're taking it slow. There's a long way to go before meeting the kids or remeeting the family. . .. If you asked me 22 years ago I would have laughed at the thought of us being more than we were. But now it just feels normal and right when we're together. Like we've been together 22 years. Very odd and welcome. I'm anxious to see where the new year will take us but am enjoying the ride.

    I also found out that there was still an energy credit for windows for 2013. Extended through 2013, actually. I had planned to replace the windows this spring but things fell into place and that is happening now. I had my patio door and entry door replaced yesterday. The new windows come next week. I'm really excited for those to come in. My windows are the original 40 year old windows. They're all being replaced with highly energy efficient windows. The house will have a completely different look with the casements verses the single hung and sliding windows. And be warmer. A lot warmer.

    Grandma just went back to Florida yesterday. I won't go into that cuz it's a very long story. It's been a very busy year.

    As I bid 2013 adieu, I raise a toast to the new year and look forward to a year of new beginnings. Happy healthy new year to all.

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    Recent Entries

    It's scheduled for July 1. To complicate matters, my back has been acting up really bad, and I hope that doesn't interfere. Got an appointment at the pain clinic tomorrow.

    I asked my infectious disease doctor if I could contact my surgeons to get a schedule to repair my hernia and have my itty bitty colon straightened, but he said I'd have to wait a while to make sure everything is back to normal. What is normal? lol This lousy bout of c-diff has been going on well over a year and a half. My hubby is my donor, and apparently he's passed all the testing. It's been over two weeks since he was tested and so far we haven't heard anything to the contrary. So I guess we're good to go.

    I went to see my primary because of my back, and he said that I'm the first person in their practice to have a fecal transplant, so all the doctors in the group will be following me. YEAH FOR ME.

  5. It's no secret that I am VERY disillusioned with ostomy support at the moment; I'm left questioning why I am still running this site and the vast majority of my dissatisfaction with it revolves around the ostomy companies and the deterioration of manners on the internet. In this post though I'm going to focus on the company side of the dissatisfaction and how their interference is impacting on ostomy support.

    Ostomy companies: Without them we'd all be pooing into shopping bags, and so for that they are heroes. But ostomy products are very costly, there's a lot of money involved in making them, and considerably more is made in profit - for example a 60p - £1 pouch sells in boxes of 30 for around £60. Because of this companies like to "sponsor" events to make themselves prominent in the community so that their products can be bandied about at presentations and events etc in the hope that we, the customers, will start using them on a regular basis. And, of course, once a charity or association accepts the companies sponsorship money then they - the company - can start flexing their demanding-muscles and demanding things such as which other companies can be mentioned in the charity advice and the size of the mentions they get, and this leave me thinking of them more in the villain side of the coin.

    I don't know if it's the economy or what, but this year the companies have been a real pain in the ass, attempting to dictate terms and with that the passion of ostomy support advocates is being throttled and my own personal interest in the area is rapidly diminishing to the point of being practically burnt out.

    Some of the ostomy-related charity heads/leaders that I know agree with me that the companies heavy handed attempt to use sponsorship as a reason to do exactly what they say as being very depressing and emotionally upsetting. People such as myself as many ostomy-related charity volunteers and leaders just want to help ostomates in the best way possible. When the companies start flexing their muscles they are making it very difficult to do achieve what we want.

    In this post I'm going to focus on what one company has done to Ostomyland/me in the last month.

    Firstly let me just state for the record that Ostomyland receives ZERO funding from companies or charities. Neither is it a job, it's purely a hobby for me that I play around with when my health problems are controlled enough for me to do so. Any bills for this website are either paid from my own wallet, or in the case of large hosting bills I accept donations from the members who would like to donate towards it. I've always done this because I've wanted Ostomyland to keep 100% unbias. I want us to be able to recommend a product because we truly believe it will be useful for the person, and not because Company X, Y or Z has paid our bills and so we have to recommend their products which may believe are not the best available for the member. The main O'land blog website which has the lifestyle pages and news posts on it also has a fairly large section of manufacturer pages. None of those companies have paid for those pages, they have been freely offered and given to get as much information as possible on to the website for the reader to review and be aware of what products and companies are available. It's not an exhaustive database by any means but I include any company that asks for a page, or accepts an invite to have a page.

    Now, bearing all that in mind, what do you think about an ostomy-products company complaining that I give too much time to the "big boys" and not enough time to "us smaller guys". This company, by the way, has a turnover of £50m GBP in 2011, and over £8m GBP in profits and with over 400+ staff. So, its not a small company I'm sure you'll agree, at least compared to their UK competitors who are lucky to reach 12m GBP turnover, and in some cases even 1m GBP turnover - that's not profit, but turnover. I would consider them a mid-size company.

    This company has had 15 years of free features/advertising on this website. 15 years of member's promoting their products when they've recommended them in the forums. Not to mention all the news posts they've had this year, and the considerable mentions about their products or services on the main site this year alone. I've been waiting nearly a year for this company to send me an update to their company page. All company information is provided by the companies themselves, including updates to their pages. I welcome all news from the companies to post on the site, and if the company has any article ideas then I'll gladly try to write an article up that will feature their product as well as other companies. So, if there's more pages for one company than the other's products then it's because that company has taken advantage of the things I've offered them and this company has not done a thing for the site.

    Ostomyland features companies which are from the top of the company scale all the way down to the home start ups and lots in between. So I dispute totally that we focus too much on the large companies. Yes, the site features the top five companies, but if you look at the accessories section, and even the pouches section you'll see that theres anything from mid-range companies down to the bottom end of the company-size chart. Then we take a step down from there to feature ostomy cover home start up, whom get exactly the same offers of updates, articles and news posts etc as the largest of companies, and of course the complaining company.

    I should also point out that so far this year the company in question have had 8 pages of news posts or major-feature on a product of theirs on editorial pages in the last 8-10 months which feature many companies products. This is all information that I've had to source myself because in 15 years they've not sent me any information in which to help give them more features on the site. On top of this they've not showed any appreciation for the features they've had on the site so far. In 15 years I've not had so much as a free pen or an impromptu thank you email off them for the company page they've had running for the majority of the site's life.

    I'm drowning in promotional pens and items and bears from companies who have appreciated the news posts I've made for them, or the product mentions they've had etc., these are all items which I've not asked for but have been sent as a sign of appreciation of what I and the admins and mods here are trying to do for ostomates and as a result the companies. I've even been sent one of those insurance meerkets from one company as they knew I collected promotional toys and bears (Natwest Pigs etc). But I'm not in this for freebies. All I really want from the companies is a bit of understanding of my situation and be left feeling like what I've done has been appreciated.

    What annoys me most is that I replied to their email - which was sent at midnight on a Saturday night of all times, and was supposedly a first contact information from this person to a stakeholder website - but after nearly three weeks there has been no reply, it's been completely ignored. In it I re-offered the company everything they had been offered over the years and the same as all the other companies regardless of size have been offered in a friendly and welcoming mail as I thought the company was mad with me. I also offered to include a quote from them about ostomy company social networking which is the next article I'm working on. I've received nothing.

    As time went by I started to feel more and more upset and angry about what they'd had the nerve to say. If they were paying sponsorship to the site I could well understand their being upset. I even contacted my contact in the company to ask who this person was, I never got a reply to that either. Thanks to LinkedIn I know that this woman was the Head of Marketing at this company - her email didn't even introduce herself.

    And all this leaves me wondering, if they treat a website that has been giving them 15 years of free advertising and marketing like this, then how do they treat the charities and support groups whom accept sponsorship money off them?

    I'm disgusted with this company, and I'm very tempted to name and shame them. But I've given them one last chance to address this issue. I've emailed my contact with the full information explaining why I'm so disappointed and upset with them. That was Nov 14th and so far there has been no reply, which does not shock me. There's not even been an acknowledgement of the email. If I hear nothing then I am considering pulling the companies pages from the website because if they do not show me any support, respect or consideration, then why should I show them any consideration by featuring them on the website? However, I am agonising over that decision. If it weren't for the fact that it would penalise the ostomates by not featuring their products (as some of them are excellent products) then I would have already pulled them.

    The vast majority of companies are lovely and fully appreciate what we try to do here on Ostomyland. It's not a job, we do it in our free time, and it's something we're all very passionate about. So, when someone who works in the sector complains about the things we do it sickens me. They are doing this to likely just pay their mortgage. We do this because we want to help people. They are the ones being paid to market the products. Not us. We just want to stop people going through the things we went through. However when you get treated like this by a company you thought you'd been helping for 15 years it strikes a huge blow against your desire to keep doing what you are doing. Especially when you have your own health problems to deal with still. I've done all I can to help the companies over the last 15 years, but it seems it isn't enough. I think it's time I start planning my exit strategy from ostomy support and thus Ostomyland (ie me leave, but the site remain running), because when I'm laid awake half the night, upset and unable to sleep or shut my mind off thinking about the company bitching, the whole politics of the ostomy support world, and the declining manners of the internet and it's users (trolls etc) in general making running a website considerably less fun than it was even only 3 or 4 years ago then I think it's time I quit. I am genuinely concerned about the state of ostomy support and ostomy charity-dom because of the companies interference in general (not specifically the one I'm complaining about), and if things continue getting worse as they have done in the last couple years then I can see it destroying ostomy support as we know it. But ostomy support charities needs the companies money to pay for the services they provide. And therein lies the problem.

    </end-rant>

  6. 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.

  7. blog-0987923001377293063.jpgHi Guys/ Ladies,

    The pic was so cute I had to post "Devil Eyes", my Sister/Hubby's brand new baby goat, only a week old, Ain't he Cute-- but those eyes !!! He plays with her dogs and thinks he IS a dog!! So funny LOL.

    My brother had to have a temporary Ileo last Jan and still has it .His Colon was perforated during a routine scope. He has Colitis but was not having any trouble , just routine. His meds( Sulfalazine works really well for him. He had Diverticulitis and was perforated during removal of a Polyp.

    He was released from the day ward although his belly was swollen with pain.

    Got peritonitis and spent nearly four months total in hosp. He was released too soon after a month and back in after ten days because he couldn't swallow food,He had a paralyzed muscle in the Pharynx which took weeks to come back to life. After a DVT and a clot in the lung he almost died a couple of times .

    Now the poor guy is back in for an Aortic Valve replacement.They knew about the heart problem last year and left it until aweek before his Reversal surgery to do an Angiogram, now he is stuck with the Ileo for probably another year!! The op was done two days ago and he came through it still breathing, happily . Now I discover he has MRSA. They say it was found in a nasal swab but with the Ileo and the large chest sutures I'm worried it will spread.

    I've had major surgery in an Irish hospital three or four times and had no complaints about anything at all except for one really Nasty nurse .

    His experience was Terrible . There was a such lack of attention and communication both between the Medical personnel themselves and with myself as the family contact that I had to go to the hospital almost every day to make sure he was taken care of . As an Irish person I don't like to go overboard about a single case but I would never allow myself-- or him to be treated there again. Just a litany of failures. Without my intervention , at least twice he would almost certainly have died. I had some horrible treatment in SF when I first got sick and wound up with less than a 50 / 50 chance because I was turned away from Kaiser , telling me I had hemorrhoids even after I told them that the toilet was full of blood every time I used the bathroom, could not eat, visibly emaciated, and was in extreme pain . I went to three different hospitals and saw four doctors !!! all the same result, they gave me a packet of powdered Gatorade and said " you'll be fine " . A private Gastroenterologist diagnosed me in about FIVE minutes and wrote a letter to get me into Kaiser. I stayed on a gurney for more than 12 hours , all night by myself in a hallway !!! before they did Anything for me !! My two brothers had to intervene to keep me alive.

    What comes around goes around. Now its my turn and he is still alive and kicking , going to see him tomorrow.We will see.

    Well the moral of the story is . No matter what hospital or country you are in you always need a " Wingman/woman" to keep an eye on things if you cannot do it yourself !!

    Don't get me wrong , 99% of the medical people I've dealt with were excellent, empathetic and great people but all it takes is one bad one to kill you.

    Nurses are my favorite people, my sister is a nurse in Washington and a great source of great advice when I need it .

    Good to be posting again. Sorry that my first new post is one long rant, except of course for the "Devil eyed goat"-- bouncing around like a wind up toy, so cute!!

    Love Y'all Magoo :)

  8. blog-0488923001353331725.jpgMy last entry was all about my upbeat attack on the wee 3000ft hills that we in Scotland like to call mountains and how good it felt to do it within a year of getting my Ileo. I note there were one or two positive comments and I am very grateful for them as I still remember feeling fantastic about it ....back then.

    Two months later I was back inside at Raigmore being sliced and diced by the surgeons again because of problems that they say "may" have been made worse by the climbing excertion. Or caused by my attempt to redesign my garden, to grow and harvest some root veg, or just possibly, my re-introduction to the occasional round of golf after a 30 year break from the game.

    As usual, I can't do things the easy way :rolleyes:

    For some strange reason, every time I go in to have one operation done, I end up having to go back in within days, or occasionaly weeks for either another one or for a follow up in patient procedure. So why should this time be any different?

    It was supposed to be a wee routine thingy where they didn't even cut me open. The idea being that I could go in on Wednesday, they could mobilise and reduce my prolapsed stoma (it could reach 4 to 5 inches on full extension).

    I would be in and out within 24 hours and back at work on Monday. Hooray, a chance to finally get rid of some of those aggregated sick leave days I've been carting around for two years now. :D

    Of course the rest went as per usual. The op was succesful, I got a nice neat wee new stoma to replace the old sausage sized one, and after a check by the stoma nurse, while in the ward on the morning after the op, I was off home.

    24 hours later; my belly started to swell, the output started to slow down and eventually stopped all together and on the Friday night I was ambulanced the 35 miles back to the hospital where it was confrimed that I had Ileus for the second year running and would need to be tubed up and observed for 24 hours or so. :o

    At least they let me do my own NG tube this year. If there is one procedure I can honestly say that I hate more than any other (Except catheterisation !!) its having to have a tube up my nose and down into my stomach. The strange thing about it was that by doing it myself, I had control of when to push and when to breath and when to swallow and it went in much more quickly and comfortably than the last years. As of now, any time they need to NG me, I'm doing it myself again. :p

    With the NG tube came a tube that went up into the stoma to try and drain it from behind the abdominal wall but, after 24 hours, it was obvious that nothing was happening as I was just blowing up like an over inflated balloon. (no comments on my usual shape please!)

    So it was slice and dice time scheduled for Sunday morning.

    The bright side of this news was that I could probably have my parastomal hernia repaired and even get the whole thing re-sited off my waistband, where all my stomas (this now my 5th) have been located since the first emergency op 13 years ago, and placed lower down.

    Of course it wasn't that simple. ;)

    A different surgeon, from the one I'd had previously, did the op. He has created a real wee beauty of a stoma and the hernia seems to have been reduced somewhat for the moment.... unfortunately it's in exactly the same place as the others were placed. I also have the additional fun of having had hole placed on my left side and lower down as well... but with no stoma there!

    So what happened? Apparently, he had it already to pop into the new site when he found that the old scar tissue round the blood supply wouldn't allow him to stretch the bowel over that far. He tried his best but was concerned that if he'd placed it in the new location it would have withered and died from blood starvation. So he did the only thing left to do - tidied up the new wound site, popped the end ileum through the old hole and created a new, smaller and less proptruberant new pooper for me! B)

    The biggest problem I had, was coming to terms with the fact that my stoma is located for ever now, where I don't want it located.

    That, and the reaction to the anasthaetic, which had me hallucinating and haveing paranoid delusions for about a week while stuck in the High Dependancy Unit (HDU). Despite my insistance that the crayon drawings on the walls were always changing colour from pink to orange to green and kept moving about, and that the puppet factory in the next room was turning out too many pinochio lookalikes, the staff in the HDU were very patient with me and I'm grateful for that.

    Eventually someone got wise and changed my drugs. The resident pain specialist nurse tells me I did this hallucination stuff last year as well, I'd just forgotten.

    Ooops - I've rambled on again - who me? Ramble? :excl::icon_biggrin: :icon_biggrin:

    Anyway, I'm now six weeks post op, feeling absolutely as low as ever. :blink:

    Post op depression always affects me but was worse this time as my wife had an operation in a different hospital postponed, until three weeks after mine, and we are both in post op recovery now.

    The strange thing is, that I don't regret the climb or the views that glorious day back in August, despite any contribution it may have had to my situation !

    As soon as I get the all clear for strenuous excercise I'll be off again and the heck with the consequences.

    After three consecutive Autumn breaks in the surgical unit of my local hospital I might as well be prepared for a fourth season next year..... I may even get airmiles eventually! :score:

  9. Alice
    Latest Entry

    Hello again,

    If you read the first part of this blog, you know the I managed to get things together and apply the EZ vent to my two piece Coloplast pouch system. I've managed to wear it for a full five days. It was a pretty good week with some change in my diet. The weather was fairly nice and I purchased quite a bit of fresh healthy vegetables which I love. Well my body doesn't love them as much as I do and they tend to make things not so pleasant on the way out. That being said, I was still quite happy with the ez vent as it's name says it all. It is 100 times quicker to pop open the cover of the vent to let air out. Unfortunately It did nothing to help my vacuum issue but I will continue using the supply I purchased and keep an eye on things to hopefully find a remedy to my problem.

    The second application of the vent was not as easy as the first. (If I would of read your comment Jason, it would of been), I managed to cut the connection of the closure part of the vent from itself. :fool: ~ but there isn't much good old tape won't fix and didn't have any problems with losing the plug to the vent.

    Next application will be the way Jason described as it sounds less complicated and quicker too! Thanks Jason :)

  10. hello

    I usually blog at www.theostomyblog.com but thought I'd share some of my stories here with you. hope you will enjoy reading.

    After 6 weeks of hospitalization and a little vacation, I was ready to go back to work. My work is mainly a matter of driving out to visit private clients. At first, I was quite nervous about whether clients would discover my ostomy, due to things like the farting, the bag springing a leak, or whatever else might happen.

    That day I had folded the bag in half, as you can see in the first picture, in order for the ostomy bag to take up less space, and I had also put an elastic bandage around my abdomen to soften the sound of any farts that might occur. This combination turned out to be less than great, because I just ended up sitting in my car with feces all over my shirt and pants.

    The first meeting went very well. There was no sound and nothing really to worry about, although I was able to feel that stool was entering the bag. Still, it wasn’t enough for me to have to run out and get it emptied immediately. So, after the first meeting, I drove on to the next client. Once again, stool entered the bag, but I hadn’t considered the fact that when the bag was folded up like in the first image, there wasn’t room for as much feces in it. The fact that the bag was folded and that I had put a bandage on, meant that the stool was being squeezed out under the ostomy bag, which meant that I was sitting in the car getting feces all over my shirt and pants.

    Of course, I had extra bags, but I had neither clean pants nor a clean shirt with me. Besides that, I had about a 20-minute drive home. In the end, I had to call the client and tell it like it was, that I had an ostomy and had had an accident in the car, and I therefore needed to reschedule the meeting. Of course, the client was very understanding, so I rushed home to take a bath.

    Sitting there in my car with feces all over everything, only a few weeks after my surgery, a few thoughts went through my head. One of them was that having an ostomy would be a huge burden, and that I pretty much wouldn’t be able to go anywhere without bringing a change of clothes. Fortunately, having an ostomy isn’t as bad as I feared. I’ll be back in a later post about the things I’ve done to prevent accidents.

    until my next blog you can read more on www.theostomyblog.com

    Best regards Tonny

  11. I can not believe I have not blogged since 2011. Let's just say life got busy and lots of fun! I do believe that since my last blog I met the man of my dreams and got married on April 28, 2012. We had a beautiful church wedding and went on a Carnival cruise to the Caribbean for our honeymoon. Luck for us that was before the drama of the ship getting stranded in the ocean. We do love to cruise!! I also have a great niece on the way in September. I am so excited since it will be the closest to us having a child of our own.

    My wonderful husband had never really seen me at my sickest point yet, but I do know he will handle it in stride when my Crohn's does decide to rear its ugly head again. He has had to carry me to the ER on a few occasions and he did great (thank goodness if not I'd have to send him to the curb). I have been having some wonderful signs that maybe my wonderful remission just might be over for the time being. I have noticed the sed rate climbing and I really do not know what the next step would be. I am already on the MAX dose of Cimzia. I will deal with that when the time comes.

    Just always have the wonderful irritation around the stoma and ugly marks from the perstomal pyroderma. Oh well it is the battle wounds that make us who we are!

    Glad to be back!

    Crystal

  12. blog-0223409001431111216.jpegThe realisation that it is 30 years since my cancer first manifested itself has prompted me to write this cancer blog. As I am part of that small percentage that has survived (thus far) recurring and metaststatic cancer, I feel it might offer some support and encouragement to those currently in a similar daunting situation.

    My cancer story is long and convoluted, so I shall write it in episodes, as it will be easier for the reader to digest (and for me to write), but a word of warning, it may become, by the nature of my cancers, more than a little graphic and as I am sure you will appreciate, not the easiest of cancers to talk about…

    I was living in Zambia, with my teenage children away in the UK, my elder son at university and the younger one doing his A Levels at boarding school. It was 1985 and had been quite a year; we had experienced a few burglaries at home, a very dear friend and his companion had been killed in a road accident just outside the town and another dear friend in the UK had died quite suddenly during surgery for cancer of the spine.

    With all the stresses I had undergone that year and with my eldest no longer eligible for free flights from the company his father worked for, it is no wonder I was at a low point in my life. I was divorced from my first husband and my second husband and I were struggling financially. We lived a fairly hand-to-mouth existence with me padding out his income by selling my artwork. Regular airfares were completely out of the question for us and I was working furiously and saving towards an airfare in 1987, in order to go to the UK for my elder son’s 21st birthday, his graduation and Christmas.

    Over the years I has suffered regular bouts of IBS at varying degrees, so when it increased that year I just put it down to the additional stress. I had been in a great deal of pain and discomfort before my younger son’s Christmas visit and when I developed other symptoms I thought it was time to see my doctor, who referred me to a surgeon. Unfortunately he wasn’t the slightest bit concerned with my symptoms and fears and I was more than a little alarmed when he didn’t even examine me! From my notes he declared it was haemorrhoids and didn’t recommend surgery, as, according to him it only had a 50% success rate, so he just sent me away with a prescription for some cream to apply to the affected area.

    Going to the toilet had become increasingly painful, to a point where I would have my left arm resting on the washbasin and the right hand would be clawing the wall with my fingernails, sweat and tears rolling down my face and I seemed to be swinging between constipation and diarrhoea. At the time I had a studio in a friend’s garage and one day the urge was so great that I just had to dash to the loo ASAP. I started work at 7.30am and my friend wasn’t yet up and the house door still locked. Unfortunately the urge was so great and the pain so excruciating that I just had to go in her garden – and hoped the gardener wouldn’t see me!

    A lesion had developed just at the edge of my anus (visible with the aid of a mirror) and I suspected the worst, but was determined not to let my son know, so that he could enjoy his holiday as usual. I would get back to the hospital just as soon as he left for the UK. In spite of the pain I tried not to show it during the following month, but was probably more demonstrative than usual in showing my love for him and telling him just how proud I was of him and his brother (who was spending Christmas with my parents) and just how much I cared for them.

    The school holidays holidays over, I returned to the hospital in January to see my doctor, Indira. By this time I could hardly sit on my seat in the hospital waiting room. Indira eventually called me into her consulting room where she examined me again. She shared my concern – and said I must go back to see the surgeon, but seeing my face she asked if I didn’t want to do this. I asked what would be the point when he was convinced I was only suffering from some minor ailment that could be cured with creams. ‘OK’, she said, shall I ask George if he’ll see you?’ George was a friend – and orthopaedic surgeon, so it seemed highly unlikely that he would deal with colorectal matters. Anyway, she asked me to return to the waiting room and she would call George and see what he said.

    A few minutes later I was called back, with the news that George would see me at his clinic on Thursday. He was more than a little disturbed at what he found and told me to be on the ward at 7.30am the next day where he performed a biopsy. I was in such pain when I came around from the anaesthetic as I had been packed like a stuffed turkey. A nurse put me into a warm bath to soften the dressing, but hardly gave it time to do so when she rather brutally dragged it out. I cringe at the recollection, but that was only the harbinger of worse to follow.

    George told me to wait two weeks for the results, but 10 days later I received a call from him just after 5pm, though he wouldn’t discuss the histology report on the phone. I knew at once it was bad news and I was to see him the following morning and bring my husband with me! Yes, it was cancer and with no treatment available in Zambia, he instructed me to get to South Africa or the UK without delay; time was of the essence.

  13. 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.

  14. Hello this is Beth, Kay's granddaughter, I am sorry to write that Kay has passed this morning in her sleep. Thank you for all of your help and friendship you had with Kay. She talked about this site often. We know that it has helped her through some tough times and good troubleshooting, along with hints and tips.

  15. 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.

  16. 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.

  17. This article was in our local newspaper the other night. The woman involved lived about 50 miles from us?

    Hoarder crushed as floor collapsed

    A woman who had clutter stacked as high as the ceiling in some areas of her home was crushed to death when a floor collapsed into the basement, medical officials say.

    The state chief medical examiner's office said Beverly Mitchell, 66, died of accidental and traumatic asphyxia.

    Mitchell's body was found Saturday as crews used a backhoe to remove debris from her home. She may have been dead for more than a week, police said.

    Town officials, meanwhile, are determining whether the home is structurally sound.

    Authorities have said they believe the first floor collapsed under the weight of all the clutter, which was stacked as high as the ceiling in some places.

    Fire Chief Jack Casner said there were holes in the roof, and water may have leaked onto the floor and weakened it.

    ===================

    End of story............I just thought this was too odd not to share. She must have been a real nut, but she didn't deserve to die.

    Anyhow, my neighbors and I were discussing it the other day. One of them mentioned that this woman had vanity plates for her car with her initials, BM (for Beverly Mitchell), on them. They said "now who would want a plates with "BM on it? And I said "I would." lol

    They do know I have a colostomy, which made it seem even funnier.

  18. I went to see Dr. R. again today for follow-up. Now he's saying that in spite of the biopsy results, he thinks I may still have cancer. He says biopsies can be wrong and that sometimes they just don't get the right spot. My faith in the medical profession continues to wane. He was very attentive to my problems with eating and digestion, and the fact that I've lost another 11 pounds (since Jan. 3) is a flag for him. He's got me scheduled for another CT scan tomorrow morning first thing, then I'll see him for the results on Thursday. He says if the masses have continued to grow, that's a clue that they're probably cancer. If not, then...?

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    Recent Entries

    Ugh!!! I don't want to go [cry] . I have been enjoying the stress free life.

    Vacation time is over for this month. Thank you Lord, I still have two more weeks to take. One I hope in Sept. and the last in Oct. Then November will be my 20th year anniversary at the job, and the four weeks kick back in for the year. Sad after so long you don't get two more weeks! But it is so hard to go back for me after being away. Oh, sorry this is about the sen sura mio!

    I don't plan on wearing the Mio tomorrow, as it is a Sunday and the job will be crowded as it is every Sunday. Besides I want to see what new things they have dropped on us this week otherwise I will not pay attention to the pouch unless it has a big fail. My usual change day from then is Wednesday and I hope things will of settled and it will be a good time to experience the Mio once again.

    I have been holding off on placing my order just till I decide if it is worth getting.

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    Well maybe not prime minister - but today Hannah got voted onto the school council. I am not sure what her campaign speech was, i dread to think really lol

    So they meet once a week, two kids from every class,except reception, so 10 kids,plus the head teacher ....12.30 every thursday in the library pmsl serious stuff- i can just imagine it now LOL

    I aksed Hannah what her duties were and she said "to improve the school for the pupils AND MUMMY I AM STARTING WITH THE TOILETS !" Hhahahahaha i knew that would be the reply, as she has serious issues about the unfairness of the toilet use policy lol now it does not affect Hannah as she has permission to go when ever she wants to go - but as the kids get older Hannah's class mates have found that toilet times are restricted a little, with good reason to be fair else they would all be in there lol.Some teachers are worse than others, i have witnessed it myself so tis not porky pies lol Tis just all part of growing up.........but YAY Hannah pmsl i shall carefuly say nothing to her re the toilet debate, else the head, who i have had erm "issues" with and she has had a good bollo***ng from Hannah's urology nurse before, will know its come from me:)

    Hannah,s not as daft, or as meak and mild as she looks- the sneak !!Cant expect anything else from a child who's life has been ruled by the toilet so far!!!

    *titter* :icon_mrgreen::icon_mrgreen::icon_mrgreen:

  19. my scope results came in today!!! NOTHING IS WRONG WITH ME!!!!! I am so happy i can't stop smiling!!!! But , i have to drink somekind of nasty stuff that makes my pouch expand. :) :) :) :) :) :)

  20. 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.