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  • Joseph

    Hi everyone,

    By Joseph

    Hi everyone, Eight months have past rather quickly since the day of my life-saving operation to remove my diseased intestine. I couldn't be better! I've had my ups and my downs which could be expected but I'm now living life to the full. Previously I suffered from Crohn's disease but now the 'suffering' part has vanished. I'm perfectly normal, aside my ileostomy pouch. I'm currently on placement with a large company that manages the trunk roads in Scotland, Bear Scotland. I'm doing Administration and I'm very happy there. They have been kind enough to facilitate my needs and place me on a training course (SVQ Administration) which will boost my C.V to a great extent. It's only a couple of months until I start temporary-employment, messy weekends expected! Here's me and a close friend, I'm the one in the blue shirt.
    • 8 comments
    • 340 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
    • 400 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
    • 489 views
  • 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
    • 322 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
    • 325 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

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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.

  4. 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.

  5. 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

  6. 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 :)

  7. Ileostomy Reversal Anxiety!

    Dearest Ostomy Community----

    First I want to say thank you for the wonderful

    people of the “Ostomy” community: great people with

    wonderful humor in a very serious time of life…..

    hats off to you all!!

    Now I am reaching out to you all again for

    support for my brother, Damon, who had an emergency Ileostomy

    over a year ago and almost lost his life. Now he is finally healing

    his surgeon is wanting to do the “reattachment” since he

    was able to save a portion of his colon.

    After talking with him today, 10/10/14, he is

    riddled with anxiety. He has been on the internet reading the

    “horror” stories of illeostomy reversals. He is now doubting about

    having this done at all.

    It took his sister (me!!) to say “snap out of it”----make an appointment

    with your doctor for a real “question and answer” appointment, and

    reach out and “talk” with those people in the “Ostomy Community” who have had

    the reversal who can talk with you about their experiences, good and bad.

    I told him that I would do my best to find anyone who would be

    willing to talk to him…….so that’s why I am posting this. If

    you have had an illeostomy reversal and are willing to speak to my brother

    about your experience we would be so thankful.

    He can be reach at:

    Damon T.

    Tampa, Florida

    [email protected]

    The sister!

    Lisa T.

    Arvada, Colorado

    [email protected]

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    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.

  8. 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.

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    I've had my ostomy since 2005 but have never blogged before. In the last couple of years I have terrible burning around the site off and on. Sometimes it hurts as I'm having movement and sometimes constant. I use a Eakin Seal with my pouch system because I have an "innie" stoma. I was the stoma adhesive powder and anti-sting spray when I change. Any suggestions?

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    BendyLue
    Latest Entry

    im suddenly faced with a surgery that will change my life! Its happening 4/11/14 (Laproscopic Abnominal Colectomy w/ ileorectal anastomosis) I have a congenital birthdefect that caused my colon to grow in a loopy twisted path that has twisted and been bound by scar tissue, another surgery to remove kidney cancer in 2010 caused much more scar tissue and now its to the point of blockages that could kill me.

    Needless to say I scared to death, I dont know much except what iv read on here about ostomy and care.

    Im going back a forth with excitement and fear. I have an out of town specialist who will be doing the procedure and iv met him 1 time, ill meet him again the day before the surgery. His nurse is going to talk to me then. (the day before i go in) I feel very unprepared and the more i learn the more i realize i need to find out what this is going to do to my life.

    Everyone tells me I will feel so much better and its a lifesaving thing i cant refuse. I understand that. And the pain is very hard to handle somedays. I want it to stop , now i am faced with this colostomy.

    I have to get ahold of my local doctor and see if a stoma nurse can speak with me here in BEND OREGON soon.

    Till then i would love to hear some others who have gone through this.

    BendyLue

  9. 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.

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    In 2004 my grandmother had surgery for a Hernia were the implanted a Mesh. But there was complications and the Mesh connected to her colon and small intestines which caused A LOT of damage. 2010 She had to have 8 operations to fix the damage that the mesh did. Now 2014 she has an Ileostomy & also she had two fistula. My grandmother is 74 years old and she is really having trouble coping with these. She gets really frustrated because her Ostomy bag won't stay on all the time and it leaks and she has tried billions of products. We need help, she think she is alone in this world like she is the only person with this problem. so i started this blog for her. To help her see there is more people out there dealing with some of the same problems she is facing day by day.

    At the moment she is struggling to keep her Bag connected to get body. She been using the Ostomy glue and some days it will stay on for a while and others she has to change it 4 to 5 times a day. if you have any advice on what products to use her what she can do just to help make it stick on there please please contact me. thank you for you time.

    Grand-daughter, Elizabeth.

  10. 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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    mothermary
    Latest Entry

    Hi everyone it has been a long time since I have been on this site. I got my first ostomy in Aug of 2010 about a year later it died and I needed a new one the second one got a hernia in it so I have been in and out of the hospital for about a year or so. I am now on my third ostomy and they moved it to the left side of my body I am not happy with this one it is much shorter and I needed a whole new appliance. I also have 10 stitches in my stomach from the hernia and they sewed my butt. I have been home recovering for about 7 weeks I am not comfortable with this bag but they say it works. For me it does not I have had too many accidents all in a period of seven weeks.

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    Brad
    Latest Entry

    Greetings all,

    I am new to the blogosphere and come here as the parent and husband of a family with Gardner's syndrome. My son Micah, went through a j-pouch surgery on June 11th of this year and as happens, got an infection that left him in the hospital off and on for most of the summer. He comes home today after his latest stay and all total 73 days in the hospital since the surgery. During this time his faith and attitude have never wavered and has been a wonderful example for everyone. To that end, he has written a song that I hope you will find as encouraging and funny as we have. The hospital staff enjoyed it enough to have a professional musician do the background instrumentals to the song. The link is on YouTube and I hope you pass it on to others who have had or are having to deal with an ostomy.

    http://youtu.be/x_e-fInhPxk

    Enjoy!

  11. 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 :)

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    loisw
    Latest Entry

    Went to the vascular surgeon today for my ultrasound of the stent in my abdominal aortic aneurysm, and the aneurysm has shrunk up even more. This is such a good news. YEAH

    Then I got home and got the x-ray report of my spine. BOO!!!! It's really bad.

    I guess you gotta take the bad with the good. I asked the vascular surgeon if they could do an ultrasound if my colorectal surgeon decides to move my stoma to the other side, and she said "Oh, we'll work around it. Don't worry." So I won't. I'll let them work it out.

  12. 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

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    TomH
    Latest Entry

    I'm a 73 year old male. My brother Greg from Dallas and my friend Ted trade jokes, cartoons, anecdotes and items of casual interest on a regular basis. We generally stay clear of anything religious or political, unless we're sure it doesn't offend.

    Here's the problem. When one of us is out of touch for any reason, the circle of communication stops.

    We need a couple of interested participants. Anyone interested?

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

    Thank YOU!

  13. Jason and family my prayers and thought are with you at this rough time with your dad

  14. I had a left side colostomy put in a bit over a month ago. I had an operation to remove a section of the colon after a not-cancerous but not-friendly polyp was found in a colonoscopy. The ends were joined together and everything seemed to be progressing well (passing air, stool no problem). A little over a week after the original operation, a few days after I had been discharged, I had severe abdominal pain and went back in to be checked. Turned out the anastomosis had failed and I had leakage of air and waste into the abdomen, infection, and all those good things :(. Following emergency surgery and another 10 days in hospital I left with a colostomy. I am recovering well and dealing with the bag, but also thinking ahead to reversal.

    I have not gotten a clear explanation as to why the failure in the first place. Other than the polyp, the colon was fine - no diverticulitis or other disease. It's not clear that the failure was the result of mechanical error on the part of the surgeon, who was very highly recommended from multiple sources. Possibly poor healing? Blowout from internal pressure?

    My question is whether others have had or know of similar experiences and whether subsequent reversal and re-anastomosis was successful. While I am otherwise very healthy, I wonder whether there is something that physiologically disposed me to the anastomosis failing, and whether I would be at increased risk for the re-attachment to work. If anyone has anything to share on this it would be much appreciated.

    Also, if there are any recommendations for eating strategies to minimize stress on the colon after the reversal to give the healing process more time, that would also be great to hear.

    Thanks in advance.

    Charlie

    Source: Reversal after anastomosis failure

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    blondqtee
    Latest Entry

    Ugghhhh... I am so frustrated! I take pain meds to manage the pain caused by my fistula and the burns in my colon from the radiation treatments. My Dr is very sensitive to my needs in this matter. So anyway, we had to change my meds cause the hydro was no longer working. He gave my another script for something better. Well in his instructions he put take 2 and in parenthesis put can take three. He knows how bad it gets. Well my damn insurance company will only cover my meds if they last according to the take 2 a day. So I am having to wait for 15 days as opposed to the 10 days. He approves the refill!! He wouldnt if I was too early for a fill. I understand the pharmacy doesnt want to get in trouble. But in the meantime I have to suffer and miss work. I am hoping the phamacist can talk to the dr about this. They are right around the hall from each other. Ugghhhh... Wish me luck!