Blogs

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Post lockdown outing

I have a prolapsed disk in my lower spine that needs surgery but for reasons I won’t go into now, surgery is deemed too risky. Because of this I was housebound long before lockdown. In the last few weeks I have become more mobile and today I went with my daughter to Waterstones the book store. I have missed it so much I ended up buying 8 books and this gave me reason to remember what I enjoy and am grateful for in life. I am grateful that I can afford to buy books and for the great enjoyment reading brings to my life. Came home to overactive Stoma but I just don’t care today. Stay well everyone

User

It’s ok not to be ok

I am finding that people are always trying to encourage positivity and not really allowing room for when someone just wants to say I hate my stoma and what it has done to my life. You don’t always have to rescue me or make me feel better. What would make me feel better would be for people just to listen and allow space for all feelings good or bad. We all have bad days. Please allow them and don’t deny your feelings. It’s ok not to be ok. Repressed feelings will come out in some other way, sometimes in anger.

User

DEALING WITH THIS

This morning I received a sign.... I'm suppose to motivate people to live and thats what I'm going to do...I'm not going to go all godly but I will tell you this whatever religion you are dont question your second chance of breathing.... so what you pepe in a bag or poop in one...hell maybe both look down and see what color it is and know it's jus life.... jus think you could be worm food or jus a distant memory.... nope im going to put on my panties or not ‍♀️ And live to breath another day.... you determine who you are and what you will do better.... you can do whatever you want ... this bag or tube doesn't change you.... hell it jus gives you more strength cuz we have to be individuals to get up and deal with this (literally) ...everyday hour minute seconds..... hey so if you read this please tell me how you show your strength dealing with this change

User

Vent

SO I THOUGHT THIS SITE WOULD OPEN NEW SOCIAL ADVENTURES BUT I SEE NOW ITS NOT .... ITS REALLY BORING AND PEOPLE ON HERE ARE NOT AS FRIENDLY AND LIKE MINDED AS U THOUGHT THEY WOULD BE .... U TRY TO REACH OUT AND BE POSITIVE AND PEOPLE IGNORE YOU LIKE YOUR SOME WEIRDO. . NOT MENTION THIS SHITT IS DEPRESSING AS WELL NO ONE SEEMS TO BE LIVING THEIR LIFE TO THE FULLEST JUS COMPLAINING.... YOU HAVE AN OPPORTUNITY TO MEET PEOPLE AROUND THE WORLD GOING THRU WHAT YOUR GOING THRU AND IT JUST SEEMS NO ONE IS GIVING THE SITE A RUN FOR THEIR MONEY.... YOUR PAYING TO HAVE SOME SUPPORT TO UNDERSTAND THIS CHANGE WHY IN THE HELL ARE YOU NOT TAKING THIS AS A BLESSING?

User

JUS VENTING CAN YOU

Lately I have been trying to figure out my place in life... Its like I live a double life maybe even triple helll.... u can't let this group of people know of your differences you struggle with because they will treat you like an alien.... so pretend you're jus as strong as them Then on the other side you can't be to independent and happy because you will label as over doing it or XXTRA... because no one is that happy to have a shit bag .... Well I'm jus happy to be alive.... im glad to be able to jus enjoy my kids and grandchildren and mend broken bridges.... breathe enjoy life ups and downs... understand me . ... yes I'm very lonely because I want the right person to come in my life soooo I'm not rushing into relationships anymore and accept jus living me.... now I'm jus trying to help those thats like me jus so they can see the blessing not the curse of having a colostomy

User

Relationship

Is it jus me or does everyone have a trust issue when it comes to allowing someone to know about your colostomy.... well im not jus going to tell someone the weakest part of my life without them showing their worthy....I'm jus saying I would like them to know that this doesn't stop who I am ...I jus have to be more careful and super clean .... well I'm not going to give up hope on finding real love because its going to take a real man to love me anyway cuz im a handful ... I'm not going to allow.this obstacle to shut me down and make me another statistic for people to tally up as collateral damage hell...I didnt ask to be like this and im pretty sure its alot of people who can relate...look guys live your life and don't make this an handicap. Besides we live in the time of technology make it work for you

User

Ileostomy with high liquid output

I have an Ileostomy going on three years with high liquid output due to UC, my gastro doctor had me on Gattex which did nothing and extremely expensive, the output caused me to have high Creatinine levels due to dehydration. I just wanted to share this info, in March my family doctor said to try Tylenol 3 with codine and it has worked wonders, liquid turned into a more solid paste and my creatinine Came down from 2.8 to 1.6 with less dehydration, I just wanted to share this with all, it may help you.

Lockdown

Lockdown

How are we all coping with the lockdown I know quite a few of you may still be working but for me I’m not well at least it’s given me time to reflect get jobs done around the house never knew I had so much rubbish but then again can’t take it to the tip As they are not open I’m not a great range of books but I’m sure I’ll start of the second one that’s a first for me I am missionary football season ticket holder, don’t know when they will finish the season .Never use Facebook as much playing games and watching a lot of stuff on Netflix cannot wait to get back to work though as I as I drive all over the country picking cars up and delivering to garages and private homes hope you’re all keeping well

User

What do we lose?

Hi Everyone,I've had an ileostomy for 15 years now and a general matter that I've come across is that a lot of Ladies have spoken about losing their Femininity since having to wear a stoma bag. This, of course, is very understandable amongst other insecurities and adaptations that We've all had to face. As far as Men losing any sort of Masculinity, I can, of course, comment that this is also true. I've had numerous rejections from able-bodied Ladies in the past because there are many physical and psychological issues to face. So I would be interested maybe in hearing peoples' opinions about how they feel their dating options now stand. Do you feel more secure and hopeful with dating a fellow ostomate or would you keep your options open to dating from a wider circle?

User

Prednisone

I wanted to blog about prednisone, the best drug ever for flare ups if you have UC or Crohns, the deadliest drug ever, long term side effects. I was on this drug for close to 8 years, the weight it puts on is incredible depending on your dosage of course. I was always a slender teen and when my doctor started me on it i put on 30 pounds. Keep in mind though when your weened off prednisone you lose all that extra looking weight. Furthermore, after surgery over the course of 8+ years my hearing started to go, i developed allergies, my joints were painful, kidney issues, i could go on. Ive been off that little white pill since 1988, and now left with all these nasty side effects. I guessed they figured living with Crohns/UC was not enough, the added burden of health issues to follow would be worse. I dont totally condemn the drug, if taken in small doses its fine and will do the job, ...anything longer then that there may be problems. They are more advanced today then in 1980 when i was d…