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Website reviews

This site was a true lifeline when I first became a member back in 1997. The support I received during the time of a critical time in my life.was greatly needed. I met so many wonderful people that became like family. And fell in love with a wonderful woman from the UK. Visited here and later had her come to me here in the states.
Posted by: brooklyn
Well it's just coming upto a year since I had my emergency stoma. Since joining MAOM I have learnt all different kinds of ideas to help with the stoma. Not only that I have made a lot of good friends who I can talk to. The beauty of this site is it's not just giving tips and ideas we talk about anything and everything. So thank you for giving us a great site. XX
Posted by: Caz67

Short review. MAOM has helped me feel better by helping others it made me feel useful, worthy, important. It took my depression away. The more you use the site the more you get out of it.

Posted by: xnine

MEETANOSTOMATE REVIEW.


I’d like to write a nice review
that might express something quite new.
Then I read previous points of view,
which said the things I wanted to.


I would endorse the things I’ve read
about what other folks have said,
for these are the benefits and things
that joining a site like this can bring.


When I was an initiate, (novice)
it seemed to be appropriate
to express myself in rhyme
as this is how I spend my time.


When contemplating what to write
with contributing to this site,
it seemed to me, my ostomy
could be expressed in poetry.


Thus, when I had something to say,
a rhyme, for me seemed the best way,
for rhymes can often capture stuff
that prose don’t capture quite enough.


I do appreciate the way,
this site lets people have their say
in whatever mode they will
about the things that make them ill.


There are not many forums for
discussing stuff most folks abhor.
So, this site fulfils a small niche,
where angst and problems can unleash.


Where raw emotions can decant,
so, folks feel free to have a rant,
and we can all associate
is something I appreciate.


                           B. Withers 2021

Posted by: Bill

I have learned a lot from this site. People are willing to share things that has worked for them,  Things like supplies, skin care, different surgeies,blockages, and a lot more.

Posted by: lovely

new ostomy   ostomate we all gone throu filling low  deppessed over your ostomy ./this is a prety open grpup./right now summer its a low re sponces  lot of familiy going ons nrrd some thing call out some one deling with your deal,.//  some one will post some thing sooner later.  /time of year.  take care good luck

Posted by: c57557555

If I was a relative newbie with an ostomy, I have no doubt that this site would be very helpful to me.  The members are quick to respond to questions and issues and they are filled with experience.  When I joined, I already had a lifetime with an ostomy, so I just regard it as a place to meet and communicate with other folks similarly situated.  Either way, it is a good site.

Posted by: HenryM

Great place for newbies to learn, I have helped many folks on here learn to irrigate, plus learned a few tricks myself. Great informative site.

  After I got my ostomy I found this site and got a lifetime membership. I have had so much help from the core members, things that even the wound care nurses didn't know. If you haven't been through this journey you don't know - only the people that have experienced this first hand truly understand what your going through. The support is enormously helpful getting through this. Afterwards when you start to learn how to deal with this new normal you can begin to help others.  ...mtnman. 

Posted by:

I just reading the Ostomy Tips Book under COLLECTIONS at the top of the page.I did not realize how much information was there. It covers a lot

of things that people have questions about. Hope this may answer some things for people. Best wishes and stay safe

Posted by: lovely

Good Evening Bob and All,

I checked my email and saw new postings. That's when I usually visit the site. I've recently met a few others who have developed UC and have made contact with them. I've directed them to this site. I also use the site to look up concerns they or I have. This site has been unusually helpful to me. I have seen questions and concerns of others posted. After I scroll down and see similar comments that I would make, I don't comment. As for social media interest, I have a Facebook account (due to work). As of this date, I have one Facebook Friend (and don't even know how that happened). I find the content here more relevant to my life. Then again, I'm old school. If I want to see how a friend is doing I just make a call.

Stay Safe and Sane all. Back to the hockey game,

SharkFan

Posted by: SharkFan

Hi Deb,

As you can see, the outpouring of love and support from this website will help you to find the strength to lift yourself up and out of Your current emotional situation. I am lucky to have my husband by my side through all of this so I will not even pretend to know how are you feel and what you're going through alone. I do know that I have great friends on this site and in my life that have been by my side and hopefully you have many by your side as well. You do have a LOT new friends here. Please feel free to talk through anything that is on your mind. We all go through A confidence deficit when we go through an ostomy surgery. Our body has been marred and your mind feels that way sometimes too. It is tough to move on but you will. You will be stronger once you realize that you are still the The beautiful woman you were prior to your surgery. Hopefully You can reach out to a local support group and find some additional friends in your same situation. It always helps to have a sounding board wherever you find it! 

Puppyluv

 

 

Posted by: Puppyluv56

Hi Crossley. Ya know, I think it’s all about feelings. I don’t mean the pain feelings which could control everything. I mean the feelings inside our heads, our hearts and even our souls. I mean the feelings of who we are now compared to who we were; how we accept our situation or maybe we don’t. My wife asked how I felt and I said, “like crap”. She asked what hurt and I answered, “Nothing hurts, well, everything hurts, I don’t know, It all sucks.” That was a long time ago. You question if your feelings are normal. How normal is it to relocate your butt hole to your belly where it’s usually in the way of your belt and, you know. But that’s where we are and for lots of us we are so much better off than we were before, physically. Emotionally, psychologically, well, that might be a different story. I believe talk therapy is wonderful if we could find a real empathic or sympathetic listener. So guess what! I found MAO and began “talking” with a keyboard with some of the wisest, kindest most sympathetic and compassionate folks on the planet. Regardless of where we’ve been, lots of folks here have been there and worse places and found their way back healthier and happier. We really do help each other.
Keep “talking”,
Mike

Posted by: iMacG5

Hi Gang,

  I was thinking what a great resource this site has been for me since I found it. It would have been really helpful, but maybe a bit scary, to have found it BEFORE my ostomy, but that's water under the bridge. But I got thinking about it, and now I'm questioning why doctors and hospitals don't provide this site's contact info to any patient even considering an ostomy today. And how can we change that so potential ostomates can learn about the road ahead for them by getting on here and asking questions BEFORE the docs go chop-chop. How exactly do you get all hospitals to provide their patients specific information, like this website? 

  I just happened to find this site something like 4 years after my ostomy when I Googled "ostomy forum" or something like that.  But I never found it during previous searches.....so I found this site pretty much by pure luck. We need to find a way to make this site available to new or soon to be ostomates......as that's when we really need to comiserate with fellow ostomates. Anybody have any thoughts how we do this?

Thanks,

Bob

Posted by: w30bob

Angelica- As usual you've written another interesting post. February 5th, 2019 was my reversal surgery after having an ileo for 6 months. I'm one of those fortunate success stories. Of course things are different now and I still have to be careful about what and how much I eat, as I don't have a colon. At first I was afraid to leave the house.My biggest fear was having to use a public bathroom and have the toilet not flush!! Even now when I know that I'll be in someone else's home, I won't eat anything beforehand. I read other people's stories and sometimes feel guilty for having had it so easy, not to mention that I have a significant other who is 100 percent supportive. I've gotten so much out of this website and truly feel for those of you who have it so much worse than I. But I feel it necessary to let folks hear about the success stories. 

Posted by: Bagface

I would certainly contact his doctor for a referral which may be necessary to get an appt anyway. It is great that you have signed up on the MAO website to help him. Have him read all the forum conversations and profiles. Many of us are here only due to our Ostomy and I suspect he may be in the same boat. It is great to hear how other get on with life after an Ostomy. We all hits bumps in the road, we all have pity parties, and we all eventually come to accept out fate, some with, and some without professional assistance! Good luck in healing mentally and physically! 

Puppyluv

Posted by: Puppyluv56

Thank you for your quick reply. I’ll discuss irrigation with my doctor. I’m sure it would be down the road. My output is still very liquid . It’s all so unpredictable at 6 weeks  post op. I have such a fear of constipation as I struggled with this forever.  I used a fiber source to thicken the stool but it hasn’t helped very much. I guess I will continue to be positive but it is a bit of a pain.  This website is great and everyone is so informative. Cheryl

Posted by: BeachRN
Posted in Diet

I am scheduled for my reversal on 12/4.  All my pre-admin stuff is completed and my GI signed off on the clearance letter this morning.  I am super excited and looking forward to not having a bag.  I just hope all goes well and heals good so I don't wake up with a temp bag which will lead to yet another surgery.

 

I have learned a lot from this website and will continue to be on here even after surgery.  To all the Ostomates out there, keep your heads up and keep pressing forward.  We all have good and bad days.  Best of luck to you all. 

 

I will be sure to post my progress after surgery.  I'm praying for you all. 

Posted by: JD90

In both of my cases, I had no choice.  It was surgery or be put 6 feet under!  I thank God that He has been with me all these times.  Without Him, I never would have known what to do and might not have gone to the hospital when I did.  I don't know if you have had your surgery or not yet but I hope you will hang out on this website when you are done.  I have learned a great deal through the people here and it is so great having others who have had the same thing done and been through what you are about to or have gone through.  The only thing I have turned down is a reversal of the ileostomy.  When the doctors did the emergency rebuilding of my original ileostomy this last February, I told them I did not want to go through this again.  My doctor told me at that time that I was no longer a candadate for the reversal.  In a way, I was very releived.  The last three years of my life have been a nightmare for me.  I do not want to go through any of it again.  If you wish to be rehooked up and they say you are a good choice for that, research it carefully.  Every surgery I have ever had except for Old and New Maxine and the emergency surgery on my broken foot, I have spent weeks researching.  I recently had my C5 C6 disk in my neck replaced with an artificial one.  I went to my pre-op with 2 pages of questions for the doctor.  I knew everything that they were going to do and could talk intellegently with them.  I always try to research my advasaries!  Don't cancel your surgery.  It is nice not to have to suffer any longer with horrible pain.  We all had to change a few things around when we had our surgeries but in the long run, most of us are glad we did it.  I know I am.  Good luck to you!

Posted by: freedancer
Posted in Hello

Thank you so much bigal1579. Think I will wait awhile on the cherries and sauerkraut.lol  I have gotten some good advice. Thanks to all that have replied. I sure am happy that I stumbled onto this website.

Morning glory

Posted by: Morning glory

Hello everyone!!!

It has been almost a year since joining this site. I just wanted to share. I know a lot of people get concern about meeting someone on here. I’m not a lifer membership and I had someone initiate to take me out . I’ve been divorced since 2009.  He lives in Chicago. I ignored the first time thinking he was joking. I live in Milwaukee. So a month later he sent me message through this site saying he wanted to meet me. That was in April this year. I must say it was the best thing that could happen to me. We talk almost everyday. We have so much in common. He comes up all the time  to spend the day or weekend together. It really does make a difference when someone has an ostomy as you. Such understanding and we always have something to talk about. I want to share because sometimes people think it’s hard to meet someone or they say this site doesn’t work . I’m a testimony that this site does work . We are talking marriage this time next year . I will keep you posted.🤗

 

Posted by: drfields24

Hi Bill,

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.

Hamish

Posted by: HungryHamster

Hi,

Not blowing my own trumpet or anything, but I was at the healthiest I had ever been prior to getting UC symptoms. I was eating very healthy and exercising 6/7 days. I'd love to know if any lifestyle factors affect UC, but I suppose I'll have to wait until they figure out what causes it.

I've been trying to occupy myself by being in contact with friends often, but some days I am really not in the mood and find it hard to drag my mind away from what ends up being a mountain of thoughts. I suppose it's all part of the learning process and I'm sure it'll happen less with time. This website has been great so far. It's great to be able to write this sort of stuff down and chat with people that understand what's going on. For that, I thank everyone on this website.

Thanks,

Hamish.

Posted by: HungryHamster

Geekyjen,

Thanks for the reply.  I will be seeing my doctor on Friday and mention Entyvio.  I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared.  The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade.  Turns out I have been diagnosed with LUPUS. It is attacking my nervous system.  I had ulcerative colitis in 1996 and they had to remove my colon.  Had a J pouch for 10 years, until it started failing.  I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently.  I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared.  I have had two hospital stays now because of the blisters and the paralyzing incident.  I will be dealing with this forever now.  I have just been working on acceptance.

I love this website because of wonderful people like you!

 

Betty

Posted by: ejbetty

Have only been paying member for couple of days. It's already paid for itself. Steve

Posted by: Hermit
Posted in Membership

Hi Hatlady and all,

I've had my ostomy for over 50 years, since I was a kid, and didn't think I really needed to be part of the ostomy site. But once active, I came to realize, that although I may not need help at the time, I was able to reach out and  help others in need. Back in the day, before stoma therapists, I use to visit new patients in the hospital or homes ... While professionals are great, it is also good to be able to speak with people with personal experience. I was a free member for awhile, but after writing often, I was given free months. I then started paying, and decided to just take lifetime membership. After all, I was going to have my ostomy for the rest of my life. I'm one of those people who can disappear for a few months at a time, but I'm always glad that the site is here, I can return and reconnect with old friends, and make new ones. This is an excellent site ... Best regards to all ... and Best wishes for a Healthy and Happy New Year.

Posted by: Immarsh
Posted in Membership

Hi Mike and all.  I am not sure how panoramic my perspective really is as my peripheral vision shrinks with each passing year.  I can tell you that when I came to this website six years ago I was truly impressed by the positive attitudes of so many members, especially the younger folks who refused to let their ostomies define who they were or what they would become.  I also came to appreciate that having an ostomy is not the same thing as having a disease.  Pardon my pun now, but ostomies and cancer don't belong in the same bag.  One is a solution, the other is a problem.  Celebrating National Ostomy Day is also well outside my comfort zone.  That's like celebrating National Wheel Chair Day.  Come on!

I think there is a need for improved public awareness of ostomies, but I am not sure how that's best done.  There remains some social stigma attached to our situation, and it's acutely felt among our young.  We need to get out of the dark ages on this issue, but not by going 'in your face' to everyone else.  I think Bill and NDY are 'spot-on' when it comes to telegraphing the right message to friends and family.  People will know how to react when they see how we accept the cards we were dealt. I also appreciate the contribution some people here are making to this effort through their publications.

On a personal note, my son has been suffering from ulcerative colitis for years just like I did.  I am very concerned because people with UC are at a higher risk for colon cancer.  Years ago my GI told me to get annual colonoscopies to be on the safe side.  I am glad I did because he eventually found pre-cancerous cells which led to several surgeries and my becoming an ostomate.  Since then I have always conveyed a positive attitude to my son about wearing a bag because it has kept me alive to enjoy many more years with my loved ones. I think he got the message. We both go to the same gastroenterologist in NYC and get scoped on the same day.  Father and Son moments!

Someone once wrote that our children are the letters we write to the future.

   PB

Posted by: Primeboy

Hello and welcome to meet an ostomate. The site charges a fee only for Full Membership, you can still interact with members here via the forums and the public chat room with free membership. The site charges a fee since it has expenses ... as do all websites, people have to spend their time to run and maintain the site, buy bandwith, servers, and other things. I am a life member here, it cost me 56$....about the price of 1 cup of coffee a week for a year. I think that is a very small charge for such a big reward. In my opinion this site is the best ostomy-related web site on the net. I hope you will stick around awhile and see for yourself. I do not own or am I in any manner connected to this site except as a member. regards. mmsh

Posted in Membership

Thanks for the welcome guys. I have to admit this website does seem very friendly and helpful. 

 

I will ill definetely log into chat as soon as I can and see who is around. Looking forward to meeting some like-minded people! :)

Posted by: Jonny
Posted in Hey everyone

You are so right.  I will never forget this website and the people who have helped me.  I had my reversal in January of 2014.  I try and come on this website weekly to see if I can help or encourage other individuals get through the day-to-day process of life. 

Posted by: Dianne

Hi Dave,  Thanks for the post.  I am so glad to hear that you have over a month of supplies now.  That is great. I was thinking about what you said regarding the NPO, then the ice chips and thirst.  When I was really sick with UC, although I could eat, I avoided it as much as possible because I would be in so much pain once the food passed through my GI track.  I was taking pain meds like they were candy.  The docs would say to me, we don't want you to become addicted.  I would respond, I will worry about the possible addition, please get rid of the pain.  It was a terrible and sad time in my life.  Some would say to me what doesn't kill you makes you stronger.  Did I need to be that strong...the answer was yes.  All of us are strong because we fought to survive.  Anyway,  I will certainly share your thoughts with my friend.  She is not on this website.  Speaking of webpages, this website is a beautiful gift to us because we all have each other to reach out, share our thoughts and chat.  I am grateful for the communications and the connections.  Take care Dave and have a nice week.  LH

Posted by: LadyHope
Posted in TPN question
Fay,

I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that lead to the loss of much of my short intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse- ET nurses who can help you problem-solve over time. It's been five years since my initial surgery and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying I would have problems. My ET nurse helped my husband and I make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two piece high output bags and allows for continual drainage. It isn't pretty but it has been a real life saver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There is a lot of great suggestions to use. I hope things get better quickly for you.
Karen
Posted by: Karen & Stella
Posted in Ileostomy
For those of you still looking for love after your Ostomy ....don't give up! One day when you least expect it there will be a message in your inbox....always remember that when your not looking life has a brilliant way of surprising you with someone in your life you have so much in common with and either your make a great new friend or you will find the person you were always looking for ! I for one thank God I found this website ........I was in a low place when I first started and now I've never been happier! ~Traci~
Posted by: ~traci~