Not impressed with the lack of people participating. Kinda disappointed.
Hello my name Denise I have a permanent colostomy bag since Dec2016 due to IBS and severe constipation and nerve damage in rectum from a post abdominal hysterectomy in 2015. Just want to let you know that I have met some wonderful people on this site. Give it a chance. If you have any questions about your ostomy ask it. We will respond if you need to rant on the blog do so they will respond. We do understand what you are going through because we've all went through and continue to go through. It's very nice to meet you.
My name is Wendy and I have an ileostomy due to Familial Adenomatous Polyposis and colon cancer stage 3. 14 years cancer free now. I too have met some wonderful people on this site. It took me a while to get my feet wet but I jumped into a chat one night and have found tremendous sopport and advice. I am struggling right now with the fact I will soon be divorced and alone since my children are almost 'grown'. Dating so far has been a nightmare so I have stepped away from it for a while.
I hope you will give it a chance....I have really enjoyed my experience here..the support has been amazing. I am starting to feel not so 'alone'.
My best to you....
Hello HigG. Welcome to the MAO site.I've been on here for years and can say that sometimes there is much more activity than at others. However, if you keep posting, that will add another participant to the list and maybe encourage others to join in.
There seem to be plenty of people who dip in to have a look but do not get as far as posting themselves. I feel this is a healthy sign that reflects the state of human activity in general - as most of them appear to drift through life as spectators rather than active participants.
Just a thought!
Drifting through life as a spectator aptly describes life for many who have given up trying to balance work with bathroom visits. I'm disappointed because I get notified of people checking out my profile but they do not participate other than in a voyeuristic, creepy capacity.
Welcome to the site. I understand your frustration. Unfortunately, not all members are paying members. Only members with a paid subscription can initiate emails and private messages. With the free membership, you can look at profiles all you want. I'm sure someone has wanted to reach out to you but is unable because they have the free membership.
Bill has a point though. Before I paid for the membership, I would post in the forums just as you have now and talked in the general chat room. You can always exchange your preferred email address in the chat. The administrators just prefer you don't post it in the forums. Hope this helps.
I was interested in your take on those who look at your profile and don't correspond. I notice plenty of them looking at my profile but I don't have the same perception of them being voyeuristic or creepy. There are many who do correspond so my upcoming comments do not refer to these people.
Those who don't respond, either to my profile or to my posts are still participating in their own way and this I respect as their choice. There is a sense in which all these sites have an entertainment element inbuilt into their structure - in a similar way to people getting used to sitting and watching the TV screen, with necessarily commuicating wth those who are doing the entertaining. ( Although there are many who will shout at the screen as if they are talking to someone live! -- I'm like that watching the Rugby!)
When someone looks at my profile, my reaction is one of mild satistfaction and appreciation becasue I view it as an indication that they are interested enough to learn a little more about me. Not that the profile tells them very much more than the posts.
Sometimes I return the gesture and look at their profile, so that I have a better idea of who takes that little more interest but on occasions I too decide not to follow through with correspondence on the issue of who is looking at my profile becasue it might prove to be more than they inquirer wants.
Just some thoughts on the subject
Thinking of using a "stoma cap" for showering too much anxiety with pooping in the shower everyday, I take off my pouch in the shower and apply a new one when I am finished. I do take Lomotil 1 mg and an iron supplement before showering and even tried the marshmellow trick but to no avail. I only have 1-2 cups of coffee before showering and so sick of seeing last night's dinner!!! Sometimes the stool is so formed it won't even go down the drain! DISGUSTING! I had chinese last night and today didn't even want to attempt to shower but changed my pouch and the stool is hard and been in the bathroom for the last 2 hours feeling and seeing hard formed chuncks of stool going into my pouch constantly rubbing my stoma and using lubricant it has left me exhausted and sick to my stomach not to mention my stoma is one sore little puppy, hard like a marble and still feel more needs to come out! Never want to see chinese food again!!
Soo I use Coloplast 1 piece Mio Convex soft pre cut to fit at 5/8 but my stoma is smaller than that so if it is urine like stool it forms around the stoma and onto the skin thus leaving skin issues that's why I change it everday. I was just on Coloplasts site after they emailed me as to how I am feeling and saw a 2 piece stoma cap to sample?? They also had a one piece as well it stated it came in a box of 30 so before ordering the samples does anyone out there have any answers for the stoma cap users? Thanks a bunch, Coco620
Hi Higg. I don’t know you and would probably check your profile so my reply would be as appropriate as possible. Not knowing if you are a guy or gal, teen, older or way older, limits my offerings. Checking one’s profile might be done as a courtesy. I agree completely with Bill’s perception and looking at it his way can take the pressure off. Who need’s guilt? We’re dealing with enough crap.
Forget what I said. I just clicked your picture and now I know who I’m writing to.
I'm here. I wish there had been something like this when I was 18 and had surgery. I'm now at the 41year mark with an ileostomy. There's been tough moments, but not really in the scheme of things. I've been thru dating, a college roommate, leaks at the wrong moment - like hitting a low backhand in a tennis match. And going to a nude beach which was very liberating, at least for me.
I remember going to an ostomy group meeting when I was 20, my thoughts were they're so old, they're all married, what do we have in common, ..... and all they really said you're so young. You get my drift.
Just want to say there's folks on this sight who understand, though I probably seem like an old out of touch frat to you.
Hi mdq, thanks for chiming in. I can very much relate to being 18 and dealing with my own mortality and the psychosocial issues associated. I had a subra acknoid hemorrhage ( intra cranial) at 18, almost died. The surgery to prevent another probably fatal one 5 months later almost killed me and it was ( I've been told) the anticonvulsant meds that gave me ulcerative colitis at 24. At 30 my colon was removed. So I do get it. I asked the question because I find people are very guarded here and that's too bad. Hope someone messages me soon.
I think it's the nature of the beast. Our society is very anti- colostomy. I've heard people say: it's gross, I rather die, ... you get the drift and folks make crude jokes about it. This is a procedure that saves lives. I think drives folks inward.
We are much alike. After 28 years of good health I had the catastrophic failure of my aortic valve and had emergency surgery for a replacement. All's great and a year later I had a serious stroke from a strep infection on my valve. After learning to walk again I returned to work, but six months after the stroke I developed epilepsy as a result of the brain damage. My seizure are controlled now. So life goes on. You just have to look forward not sideways or back. Or that's what works for me.
I was diagnosed with UC when I was 14. So I sorta grew up in a children's hospital. Which impacted on my perspective in all sorts of ways.
Thanx for sending me a note.
When I was young my docs would have me talk to kids and their parents about my thoughts and experiences.
Having health problem aside from the physical aspects can be lonely too - at least it can seem that way somtimes
Glad your siezures are controlled. I've been free of those for 22 years and off meds for 10. You hit the nail on the head when speaking of loneliness. Thankfully this forum exists but until last month I'd never spoke to another person who understood what's it's like. You're the first ever in 32 years I've talked to who's had siezures too. We should swap weird places we've had siezures stories lol.
Been on here 3 weeks and not one message from anyone. Guess being alone is what everyone really wants. This site sucks.
It looks as if Higg's messages have been erased form this post and his profile seems to be longer available. I am not sure if this was his choice or that of the administrators but I feel thatsome of the points he made were quite valid for a forum discussion.
According to what I can remember, he came on here to find friendship and to recieve correspondence. It seems he found neither of these things and therefore had a fairly negative view of the site.
Now, most of us understand the need to rant about our situation regarding the stoma and its drawbacks but what do we feel about people who rant about their other needs? Personally, I think that a person's personal experiences should be legitimate things to express, even if theycome across as a bit abrasive in the way they express them.
I am not sure if Higg initiated much correspondence, which might have been a reason why he did not get much back but his remarks might be useful to note when it comes to looking at newbies correspondence and then having few or nobody reply.
What do you think?
I realise that this thread is a few weeks old, but I notice that no one answered your question.
Being a new member on this site as of about two or three months ago, I would like to reiterate what you've said about finding correspondence and a need to rant. I completely agree that we all need to rant, and I don't really care what it's about or who it's coming from. Going through the sort of stuff that we've all been through can bring other issues to the surface, and so I'd rather read someone's long winded rant about it than have them suppress themselves. It's common knowledge that doing that will only cause issues later on.
Personally, I've found this website to be fantastic in regards to being able to rant as well as to have a chat to people with a similar experience. My experience with colitis was rapid and so I never had any of the long term troubles, so I felt like I had lost a good life after surgery. Having such a specific experience, it was hard, even on this site to find someone with a similar experience, but by talking to people who had been through everything that I was going through, it made everything easier to deal with and often put things back into perspective. I was very apprehensive about joining this site, but it has probably been the best choice I've made since my surgery. I tried seeing a counsellor for a while, but it's hard when they've never seen anything like colitis and an ileostomy bag, so they don't know what effects it has on people.
In regards, to the friendship part, I can understand where Higg is coming from. Being 18, it is very hard to find someone similar to my age with a similar experience, though I didn't join this site with friendship seeking in mind. I understand its benefits though, and I can understand how not finding anyone could easily put someone off a site like this.
Overall, I just want to end by saying thank you to you, Bill, and everyone else on this site for being great support. It is unfortunate that Higg could not have such a positive experience as I have. I think it is very important for new members to be recognised and for them to ask any questions they've got or rant about anything that's concerning them, ostomy related or otherwise. It certainly helped me. Unfortunately, I have been quite busy for the last few weeks with uni starting up, so I didn't look at this site much, other than to make a couple of posts. If I had seen Higg's post, I would have replied, but I simply missed it. It is very unfortunate that Higg did not get the support and friendship that he sought.
Thank you so much for taking the time and effort to read through these posts and to formulate what seems to be a comprehensive and helpful reply.
Please do not feel that you need to be on this site all the time so that you can respond quickly to posters like Higg. -- Although he probably would have benefitted from your input at the time, you never know, he might still pop in to read some of the correspondence such as yours and get something from it at sometime in the future.
I love to here about you and your decision making processes, partly because I had similar decisions to make - many years ago but also, partly because people like yourself give hope and inspiration to so many young people who feel that their former lives have been ruined by chronic illness and circumstances beyond their control. It is good for them to hear that there are others experiencing similar anguish and ambiguity about what they should do with their lives in the future. The very fact that you are working on these issues and sharing your thoughts with others is a very positive thing and I am quite surprised that you found time to respond to my post in the way that you did. That's not to say that your post is not appreciated because it most certainly is and I hope that you find the time to come on here again as often as your timetable and busy schedule allows, to give us the benefit of your growing experience and wisdom.
Hello I'm angelicamarie, there are some good people on this site, that have been ostamates for years. I joined this site last november, and I've meet some people that I feel as though there my family. And you will too if you give it a chance.its thousands on this site I have not met them all may never! However the ones that I have met were very pleasant and helpful. Have you stepped out yet, to meet them? Try and you will change your opinion!!! And for those that aren't pleasant don't even let that move you the good out weigh the bad. Good luck and best wishes !! Angelicamarie
Hello jazzygurl, have you tried the chat room? In the morning about nine or ten, or evening around 7 pm to 10 pm. Good luck !! Angelicamarie