Seeking Support and Friendship Amidst Ostomy Challenges

Hi everyone. I am just putting myself out there again. I could really use a friend right now. So many complications since major surgery last fall. My nurses have been trying to find the right system (2 piece) for me and nothing has worked. I'm just starting a new system today from Salts. Fingers crossed it works. But I am just so sick of all the ostomy stuff. It makes me feel really sad. Fed up!

Feeling sad seems to be a common theme among ostomates. I am new and have had many days when I want to give up. I have a colostomy and do appreciate a two-piece system. I may at times use a seal and always put some powder and have had good luck. I am sure that you will find confidence, which I think is the key to this life. It takes a lot from us to be able to find that place of harmony. It is possible because I have reference points that this life does not have to be sad all of the time. Here you have found many friends, I kid you not.

I have been lucky and not had many leaks and can go for about ten days before I change my kit. Watch what kind of lotions, soaps, shampoo, or conditioner you use. Some will leave a film on your skin that will not let the ring stick very well. I make sure when I change after a shower I am completely dry. I use the empty spool from a roll of tape as a steam roller and run it over and around the ring. The rings I use are Hollister or Eakin Cohesive slims. At my supplier, I saw some new and improved rings from Hollister, which I may try in my next order.

I, too, am having lots of problems. I've tried so many different products. It's so frustrating. I just had surgery this May and boy oh boy. My nurse had a sample of a deep convexity one-piece that I really liked, but they're new to Canada and I have to wait a couple of weeks to get them. I really empathize with you. One thing I've been constantly reminding myself is that soon it'll be just part of the day. Keep trying, it'll be worth it.

I can empathize as well.  It took me months to figure out what was going to work best for me and my body.  I think I asked for samples from every vendor and every type.  Turns out the convex ones with a seal under the wafer work best for me.  Two piece appliance. 

It's just a part of my body now.  I can go anywhere from one day to ten with this set up. I always carry parts for spares.  I make sure I don't use soap around my stoma and I blow dry to make sure it's really dry. 

I hope you find the best appliance that fits your life.  That's really what it's all about -- fitting our life.  :) 

My Ostomy Journey: Ryan | Hollister

I sympathize with how you feel. I don't know the nature of the problems you are having, but my first year with my colostomy I had problems with whatever I ate flowing right through my stoma without waiting to be digested. I kept on trying different foods, but nothing worked. Finally a chance meeting with a friend resulted in his telling me to try taking loperamide, which is the anti-diarrhea medicine marketed as Imodium. After reading about its use on this forum and discussing it with my doctor, I started one pill at a time until I found that for me I needed to take one pill with each meal. Since then I have not had any further problems. You can buy loperimide very cheaply on Amazon. I hope you find a solution to your problem soon.

I'm about 2 hrs from you... I'm having vocal cord problems and can't talk well, but I can text. I haven't paid yet, lol, so if you send me a message, I'll give you my cell #.

Hello everyone, let me be the voice of encouragement here. The first 6 months are the hardest, but it gets better. It's difficult during the first 6 months to find the right appliance and prevent leaks because your stoma is ever-changing. OH MY WORD - there is a HUGE learning curve. Just when you think you may have it all worked out, your stoma changes shape and you're back to square one. Keep trying and call all the vendors to get samples. Talk with them about what you're looking for so they can send you the appropriate samples. Contact your ostomy nurse for help finding the right appliance. I use a Hollister 2 pc system with a mini-pouch and I use the ColoMajic liners. Check out my Facebook page called Awesome Ostomy. It's free and full of tips, ideas, and fashion help for ostomates.

Daisy

Hey Pammer, it’s good to hear from you again but not good that you’re having problems.  Tell us what’s not working, what the problems are and we’ll help you fix it. 

You have lots of friends here; very caring, wise and wanting to help you.  Sure you’re sick of all this ostomy stuff but it’s just a part of you.  It’s not you.  You’ll find the right system and things will change dramatically.

Respectfully,

Mike

I really feel for you... I'm not a full member to send you my cell phone number privately, lol. I'm definitely here for you and hope you are doing better.

I woke up this morning and Big w(*(*((y only to look under the covers and see it was only the bag, lol.

That is so funny!!!!!!