a year on

Well, it's been a year since I had my ileostomy, and what a blast it has been. Things have improved beyond anything I could have imagined, and if there is anybody out there who is new to their ostomy and feels their world has ended, I hope you can take some hope from this.


This time last year, every minute of my waking hours was devoted to this bag, checking, looking, constantly stressing myself and everybody around me. I would be in the shower without the bag on and unable to get out due to the stuff keep pumping out. We had it all over at times, and there were days when I would just scream and cry. Yes, this mature man bawling and taking it out on everybody that got in my way.


People challenging me on why I was using a disabled loo brought frustration and anger. Doctors' surgeries questioning me on the amount of supplies I needed caused me to flip and really lose the plot so much that I was sent to a medical shrink, which was a laugh.


I have managed to change things around by getting myself organized; a small amount of planning goes a long, long way with this thing. I decided that the reason people were asking why I was using the disabled loo was that I did not look disabled and, contrary to what I thought, the bag did not show and that everybody was not staring at me. In fact, most people have forgotten about it now, and someone at work even asked last week when I got it reversed, thinking that as I was back working full time, I must not have it anymore.


I even go out now with hordes of spare bags and wipes and stuff, and sometimes I forget to take anything at all.


I've managed to lose weight and am fitter than I've been in 20 years. Tomorrow I'm off with my walking pals in the Northumberland hills, and I'll be leading the way.


I've listened and talked with people on this site, and you have all been a great help. I now realize it's just normal folk that end up with ostomies and they all have the same normal problems as me.


So, if there is anybody that has just had this done and is struggling, then have some hope.

well said. it gets easier as you go.

Hey Blue ! Happy to see you're doing better. I still do not like this thing, but you are right, it gets a lot easier and there are even times you totally forget it exists. Any newbies may not believe that (I know I would not have) but it is true. Hope life keeps getting better for you. HUGSSSSS Z

Hello blueonthetyne. A great blog! and one that many of us can relate to. I feel that this type of feedback about the early days of coping with ostomies will be very useful to those who are just starting out on this journey of discovery especially as it points the way to a better outcome than they might otherwise be considering.Best wishes Bill

Thank you for the message of Hope Blue. I just celebrated my two year birthday March 11. What you shared is so on the mark. Each day I learn how to manage better so living with an ostomy becomes more comfortable. Funny, people still ask me once and awhile about my illness/surgery. I smile with no comment when they say thank goodness you did not get a bag.... Thanks again. LH

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

It is truly an adjustment, and it takes time to come to terms with this change in lifestyle. I have had my colostomy for a little over three years now. I spent the first year frustrated, crying, depressed, and not wanting to leave the house. If I blew a gasket while out, I would be mortified, never to return to that same place again. It takes a while to figure out what system works best, and that what works for one person does not necessarily work for you. And yes, organization is extremely important. I have a linen closet that I have converted into a supply closet, right outside the bathroom, so that if I am in the middle of a change and forgot to restock the basket in the bathroom, I just have to open the door and get what I need. I have learned when my quiet time is and usually shower during that time if I am taking everything off. Most times, I shower with the bag in place, although I do so enjoy having it totally off and giving my skin a breather. For anyone who is new to this, it does get better, gets easier to deal with, and is much better than the alternative.

Hello BlueThe first year is tough and I'm really glad to hear that things are getting better for you.As for being challenged when using disabled toilets, I've had similar confrontations. Guess I'm lucky being female as I carry spares with me in my handbag. Always open it to show a spare bag and ask if they'd like to help me change it. Works every time. A bit evil, but sometimes it's necessary to shock the pomposity out of them. Do you have a RADAR key?My son is autistic and at first glance looks fairly normal so he has had the odd 'tut' from the general public for using disabled toilets. I dare not send him into a men's toilet as he wouldn't have a clue about urinal etiquette.It's none of their business. When I was younger I used to get very anxious about being challenged. These days, I don't care.The only thing that has always bothered me when I'm out and about is noise from the stoma, especially in a quiet environment (haven't got a dog to blame for the farts).I guess you could call me a veteran. Thirty five years and counting. I had mine when I was sixteen, so the emotional and physical side (would anyone ever accept me?) of having a stoma were my biggest obstacles in life.Still have trouble looking at myself in a mirror and seeing how other people would see me quite difficult.Had the odd disastrous leakage issues over the years with Fred. I look back and laugh at them. now. At the time, I wanted to curl up and die until I got home and reminded myself that the people who'd witnessed it, I'd probably never see again. Only happened once when I was working and the vast majority of my colleagues were very understanding and supportive.I disclosed to close friends which made things slightly easier, especially in the early days.You get hurt and sometimes you feel betrayed but you also find out who your real friends are.I always have in the back of my mind that without Fred I was told that I probably wouldn't have made it.A sentiment often voiced on this site.I'm in Northumberland. Don't get to the Toon very often these days.Hope you had a fabulous time with your mates walking in the hills.Best of luck to you.

Hi Moonshine, great to hear from you. Wow, 35 years and it's nice to hear you get on with your life; that gives newbies like me a huge amount of confidence. I met a lovely lady from up your way in the Freeman when I had this done. I was thinking it might be you, but on reflection, I think hers was only a couple of years old. I feel I'm doing okay, more good times than bad, and the feeling of being totally healthy is priceless. I was in for a 4-month check this week and had a chat with them, and I've decided to keep it rather than ever try a reversal. Nice to hear from you.