Welcome

Hello everyone!

I'm happy if my blog caught your eye. My name is Halla and I wanted to start this blog to talk about all kinds of issues surrounding my illness and a recent ileostomy I had about a month ago. In my country there are not a lot of support systems or groups for people with ileostomies and I really needed something or some place to just tell what's on my mind..  I also hope to talk about things with people who are in similar life situation as I am (though to follow my blog you don't have to be in a similar life situation :D).

I am in my thirties, I live with my boyfriend and our dear baby dog. No children and we are not planning on having any either (and yes I do like children though I don't want one). I've worked as a kindergarten teacher until 2010 when I had to quit, due to my illness, Ulcerative Colitis= UC. I was diagnosed first in 1996 and by the year 1997 I already had a j-pouch which saved my life, without it I wouldn't be here. I also had a loop ileostomy for about a year before it was reversed and I continued my life with j-pouch. This year was the hardest year in my life and I really hated my ileostomy. It was super painful, smelly, easy to notice and it made a lot of noise. But the worst part was that it was so painful. I was the happiest girl in the world when I got rid of it and felt like now is my time to shine.

It took about 4 years until I noticed I had my first stricture close to my j-pouch and at that time I also got the diagnose of pouchitis . So this meant my illness was lifting it's ugly head again. It wasn't long until my doctors realised nothing helped the pouchitis just like in the previous years no meds helped my UC. So I started a slow life of waisting a way. At this time I was already 22 years old and wanted to study a profession. It took me 4 years (normal time would be 3.5 years) to get my Bachelor's Degree in Social Services, but I did it. It was both the best time of my life and the worst. I was in a lot of pain, went to the hospital at least once a month because my strictures. I also underwent 2 surgeries during this time and at the same time I tried to live my life as a young woman and a student. For some reason I always knew that this is the time to enjoy, thought it was really hard. As things would never be the same again. And I did enjoy, I loved being a student, living on my own and taking care of myself.

But then I graduated and I had to start working. I also started my first relationship at the same time and moved in with my boyfriend a year after we had met. I worked as a kindergarten teacher for 3 years after graduation until I had to stop. My illness didn't allow me to carry on the same way I had before and my energy was completely gone. The doctors had already suggested permanent ileostomy for me years ago but I still wasn't ready for it as in my mind ileostomy would mean my life was over. So I fought against it for several years until I had to do it. Not because I wanted to or because I felt like it would make my life easier but because of money. I had been declined already twice by my insurance company for health benefits since they thought having pouchitis is not a reason for being unable to work... The only reason they were able to decline me was the fact that I hadn't taken all the necessary treatment for my illness, which to them meant ileostomy.

So a month ago I got my ileostomy. Right now I have nothing good to say about it. I'm in way more pain then I ever was with my j-pouch and I can't really see a happy future in the horizon. It has only been a month since my ileostomy so it might still get better, but I doubt it. My permanent ileostomy is built way worse then my loop ileostomy ever was, so all my worst dreams came true on this one. All my doctors and surgeons assured me that ileostomy will make my life so much easier and better but I knew it wouldn't. I was so hoping I could be able to say that all  my fears towards it were silly and I should have taken it years ago. But sadly all I'm left with is the fact that I can now tell my doctors and surgeons "I told you so" which isn't really making me feel any better. But time goes by wether I want it or not, so all I can hope is that things will get easier with time.

I still don't know if I will get health benefits from my insurance company but I do know that it will take several years before I will be able to work, if ever. My dream is to be able to enjoy life at least in a way that I could do normal things, go to places and enjoy good food, maybe even travel. My second dream, though not the biggest one, is to be able to go back to work one day, even as part time if necessary.

So this was my medical history in a nutshell. I'm sure I'll talk about it more in time but now you'll know where I am coming from :)