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My new Iliostomy


Sat, May 28, 2011 5:40 PM

Welp, I went to the ER a week ago from this past Thursday. Stayed in a week, and had the surgery done.  The pain from the surgery is way less than the Crohn's pain I was dealing with. I.E. I was taking tramodol at least twice nightly to get even a few hours of sleep before the hospital, and didn't even use my PCA pump at the hospital. I just got home today. I have a temporary ostomy, and am expecting it to be around for the next 3 months. I have a feeling it will be a long 3 months. The ostomy nurse told me that this will get to be old hat sooner than I think... I hope she's right, because this ostomy stuff definitely feels awkward to me... and I'm a nurse who has taken care of other people's ostomies before... just a totally different world when its for yourself. Anyway, just thought I'd put my latest adventure up in case there's anyone else out there in the same place who wants to talk. Take care everybody!!!

FPO neverending
Joined Dec 8, 2010

Wed, June 01, 2011 10:34 PM

 Reply posted for katya.

Its not too too bad having one actually.  I guess this would be my 5th day post surgery... and I had a pretty great day altogether.  There was a day there where I just crashed emotionally.  I just cried, and felt like it was never going to get better.  I cried to my boyfriend who is more supportive than I could ever imagine anyone being that it was so unfair that he had to take care of me, and that he should just be with some other girl who can go out and do fun things with him... I was miserable.  Then yesterday afternoon I started feeling a lot better really quickly, and through here I found out that crummy day was pretty normal to experience.  Its still weird to empty the bag into a graduate to measure it and then flush it, and its still weird changing it. You can't feel the stoma cause it doesn't have nerve endings, and to me it just makes it that much harder to comprehend that yup, this is my intestine sticking up through the skin on my stomach.  When changing the bag and cleaning the area, I think it feels a little eerie... in my head I just think "ugh... what IS this thing."  But today I can say that when I wasn't doing anything with my ileostomy, I felt pretty normal. I went to my office to visit people from work, went to a few stores, went for a decent walk,  went to Rita's and got a gelati =)

I have an awesome awesome support system though, my family and friends have been great, this site has helped, and I have a really really good surgical team working with me. I know I'm still adjusting, but I don't feel overwhelmed anymore. 

FPO neverending
Joined Dec 8, 2010

Tue, May 31, 2011 10:42 PM

 Reply posted for katya.

Arghghghghg!!!! This is my THIRD try to try to respond to this!!!! The first time it didn't work was my dumb fault, the second time I don't know what happened.... but it is late for me, and I'm going to try to respond again tomorrow if I get the chance to... if this message even works!!!

FPO neverending
Joined Dec 8, 2010

Tue, May 31, 2011 1:13 PM

 Reply posted for NeverEnding.

Oh, yeah..... we think we get it, but reality is something else.  Because you are a nurse, and taken care of other people's ostomies before, you thought you were comfortable.  I have nurses in the family and talk about as much of the IBD as I can < too much for 90% of the people> as a way to learn and cope and teach for the last 11 years.. But I have been faced recently with a decision.  Keep going as is.... or have a permanent ostomy.  I have helped care for my grandmother who had a bladder ostomy...read blogs from people who have ili and colostomies.... But am not getting much reality info - Just the rest of their life info.  What changed for you? what is frustrating/difficult?  What are you uncomfortable about?  What is challenging you ?  I am mid 30's and know that temporary is not an option, and I am really on the fence.  Hard to find women willing to share to help me work through the issues.  If you want to talk and vent; it would really help me!

FPO katya
Joined Sep 15, 2010

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