Our community blogs
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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!!
- Read more...
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State of the Community – September 2011
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
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. 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
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):
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
Most board members online in one day: 74 – 01 August 2010
Most board members online at once: 125 – 23 May 2011 (Awesome!)
Green = Broken/Increased since last SoP Blog
Red = No Change/Increase since last SoP Blog
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?
Recent EntriesLatest Entry
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.
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 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.
Hi all ,
sorry not been back here could not get online with lap top and this is to footery to do from phone.
Cammys surgery went as planned stomas no more!!!! he went to theatre at half eleven ish and was not back on the ward till half six
boy did that feel like an eternity .When he came back down to the ward he had morphine infusion and an epidural which they kept topped up,
he was on IV paracetamol and three different iv antibiotics .
He had packing in his rear end which caused him great discomfort ,that came out Friday nite to his reilef.
We are now day four epidural is down ,back ground morphine is off he is only getting what he presses the pca he is still having anti biotics
IV fluids which they have had to add to as he was loosing so much through his ng tube.
He is sleeping pretty much all of the time which is good .
Later thanks for all the well wishes
Pauline & Cammy xxxxx
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!!!
Who am I now? Still a person, a woman, a partner, mother, daughter, sister, friend, teacher, urostomate, cancer survivor, me... I'm still me. My ostomy journey began in mid 2007 with bladder incontinence symptoms that were treated for UTIs and menopause for six months. Finally diagnosed in January 2008 with bladder cancer, I had a procedure to try to get the tumour out but it had invaded the bladder wall.
In late February 2008, I had a radical cystectomy, where I got three operations in one. I had a hysterectomy because those organs were so close to the bladder. Then to enable the ureters to carry urine from the kidneys to outside my body without a bladder, a conduit was made from my ileum and the small intestine sewn back together.
So I awoke finally, to discover my stoma, a part of me, poking out cheekily. It had a good spout and performed well. I was truly amazed by it. Before leaving hospital, I was trained to care for my stoma. Gradually my strength returned, going back to work after nine weeks. Interests such as bike riding, gardening, walking returned soon after that.
So what's my new normal? For a start, I'm here! Without the urostomy, I wouldn't be here full stop. So how do I manage to work full time, garden, bike ride, camp, travel, trips to Melbourne, etc? Fortunately, from the start, I had a supportive family who say mainly all the right things. Some have moved on and say they have largely forgotten about my urostomy. Most friends either do not know about it at all or don't understand much past the basics. But all treat me as normal which helps. Funny though, I'm never on my own. I have a good support base.
Fortunately the practicalities of a well-formed, well-positioned stoma have also assisted me. I try to keep pouch and base plate changes to a minimum of fuss- quick and precise. The reality is leaks and frequent toilet trips could happen. My leaks have all been due to human error- mine! But they are infrequent and I have confidence in my appliances. Also I'm pretty upfront. If I gotta go, I gotta go! I ask people to look after my class or nick out during shows, movies, etc. I'd rather do that, than leak.
During the day I live a full active life. And at night and weekends, I've surfed the internet for ostomy sites. The forums for ostomy questions and answers and the live chatrooms, where I can talk to other ostomates, provide all the support I need between my real support meetings. Armed with a great stoma, basic training, acquired knowledge and continued support I'm ready for anything. Last December, eight months after my operation, I rode the last three days of the Great Victorian Bike Ride, covering 250kms.
I realise it's not always easy. But I never truly felt sad about having a stoma. For me it's a celebration of life. My suggestion to those who want a better normal is to get fitted out with the best appliance possible; seek support from those who can give it; set yourself little challenges; and always be prepared for whatever this wonderful life sends your way.
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!
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.
this is me an this is my bowel
I dont like telling people about my bowel disorder
when I grow up I want to be an Inventor so I will get lots of money
I told my X friend (Tom)about it but he understood it wrong and told my girlfriend But then I told her fully and every thing was fine
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my girlfriend wants to be a teacher
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
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.
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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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