Glad to have you here, Lindsay. 

Thank you for sharing your story! 

Hello Lindsay, 

Welcome to this awesome forum, I also was on youtube and on other forums to see if I could get ideas or how to look after my ostomy before getting it and find out tips and tricks that i still us to this day.

i know i spent hours looking for forums that there were people online but each one i went on to their posts were more than 2 years old. :(

But it is good to have this awesome forum to talk to people that have been or are going through the same stuff i have/am. 

Hi everybody. Just wanted to briefly introduce myself. But first, I want to thank Eric for this wonderful site. It has helped me so much. I look forward to participating here. Great to have a place to exchange info.

I got my ileostomy two years ago this July. I am so much better , after three and a half years of real suffering ( you ALL know how that goes). I had Ulcerative colitis and am now a very happy ostomate.

My picture posted here was taken outside of Hilo, Hawaii on our second trip to Hawaii since the BIG FIX. We have also gone to Spain. so, yes..very much better. I didn't really leave the house for those three and a half years ( except to go for medical things). I am also married to a saint, which helps a ton.

I actually 'joined' this group almost three weeks ago, and Eric welcomed me ( thanks), just about a hour before I was going to make my first post I started feeling a lot of pain as from  a blockage and went to ER for the night. Eric you are ABSOLUTELY correct on the need to avoid a GN tube. NOT my finest hour (or six).

Anyway, that turned out to be a peristomal hernia with the pain being caused by the strangulation of my ileum. YUCK. Going to the surgeon next week to talk about a repair.

I will let you know how that goes!

Anyone else have this problem?

PLEASE share if you do or did.

I am looking forward to participating and learning from this forum,  thanks again.

Hi. I am a 65 year old ostomate. Also a liver transplant. Also a kidney transplant. Also a rectal cancer patient. Also Chrohns disease destroyed 200+ centimeters of intestines.

Thank God l am alive! 

As a Johns Hopkins Hospital patient in Baltimore, l am grateful for my wife of 42 years constant support. Without her love, l would have been lost.

I use a two piece bag . M y ostomy happened 2 years ago.  The advice given to me by my original ostomy WOCN was pathetically not very correct for my situation. I had to learn the hard way. 

Fortunately, l hooked up with competent information from other sources. I joined Anne Arundel Ostomy Assoc. and Greater Baltimore County Ostomy Assoc. Information and exposure to other ostomates preserved my sanity. 

It took a lot of effort on my part to be comfortable with my situation and it is still not 100%.  My attitude is to keep moving forward. As a hobby, i deliver food to patients in local hospitals. It helps them and me.

Since this is just an introduction, i will stop now. More later...

Posted by: Dona

 

I got my ileostomy two years ago this July. I am so much better , after three and a half years of real suffering ( you ALL know how that goes). I had Ulcerative colitis and am now a very happy ostomate.

I am also married to a saint, which helps a ton.

Eric you are ABSOLUTELY correct on the need to avoid a GN tube. NOT my finest hour (or six).

   

Welcome Dona,

I totally understand about not being able to go anywhere I was the same didn't really leave the house unless I really had to (hospital, GI appointments, GP) 

I am so lucky to have a very very understanding support system (family) as you are with your husband :)

OMG don't start NG tube stories it brings tears to my eyes even thinking about it.

Posted by: Zvitusk

I use a two piece bag . M y ostomy happened 2 years ago.  The advice given to me by my original ostomy WOCN was pathetically not very correct for my situation. I had to learn the hard way. 

Fortunately, l hooked up with competent information from other sources. I joined Anne Arundel Ostomy Assoc. and Greater Baltimore County Ostomy Assoc. Information and exposure to other ostomates preserved my sanity. 

 

   

I think every one of us has been in this seat with their stoma nurses. I remember when I got my stoma the nurse kept saying that they can give us all the info they can but as they don't have a stoma themselves they can't really say this is going to work or that is. 

That is why I am training to be a stoma nurse so when the patients ask how would you know I can say because I myself live with one :) 

But im so glad that you have found somewhere to get info from :)

Good for you,uc2ostomy,

I REALLY wish I had a stoma nurse who actually had one. Everyone is kind and helpful, but they just do not get all of it. Good luck!

People keep telling me the gas vents work well! HA.

But like all of you, I am just happy to have my life back. I really do not mind my ostomy at all. It is SO VERY much better than before. I am nearly 69 years old ( this July) and after seeing how well this thing does work , I decided early on not to have reversal surgery.  I can not imagine going back to fear of diarrhea  every waking, and not sleeping, moment. No sleep, food or exercise for over three years was plenty! On the up side , I did get a lot of reading done! 

I also think no one ever understood how just horrible the lack of sleep is. Sometimes I was up every 10 minutes for four or five hours at a time....I am sure we all have nightmare stories.  Well, at least I didn't have ACTUAL nightmares, since I couldn't sleep. ( black humor helps!).

OMG don't start NG tube stories it brings tears to my eyes even thinking about it.

I guess its NG not GN like I wrote! Ha, I hated it so much I can't even remember its name. It was more like 12 hours of it. They taped the thing to my nose and then pinned it to my gown...YIKES! Let us all avoid that in the future!

Posted by: Dona

I guess its NG not GN like I wrote! Ha, I hated it so much I can't even remember its name. It was more like 12 hours of it. They taped the thing to my nose and then pinned it to my gown...YIKES! Let us all avoid that in the future!

   

I definitely did not have a positive experience with the NG tube. I'll start another topic about it so we don't sidetrack this one.