My heart and soul

I'd like to talk about my boyfriend who has been with me trough the hardest time of my life concearning my illness. When we met I already told him about my illness at an early stage. I also told him that here was a pretty strong possibility I would be having an ileostomy sometime in the future, not sure when. It might be after few years or when I'm 60 but at some point it would be part of me. I was really scared to start a relationship. Firstly I can't imagine anyone really loving me and finding my body, with all it's scars and flaws, beautiful or hot. But my boyfriend did, right from the start. The only thing he ever said negative was about my scars that my tummy looked a bit sad and that he had noticed my scars, that's it. Up to this day (we've been together for 6 years) he has never said anything negative or hurtful.

I never imagined I'd find a guy like this, who'd see who I am inside and not look at my disfigured body only. Then again, this is my first relationship so I have no idea what guys would have said to my about my scars but the thought of getting any negative comments kind of kept me away from men for a long time. I did want to be loved and I've always wanted a relationship but never REALLY believed there was someone out there for me. It hasn't been easy with my boyfriend and I and my bad self-esteem has been in the way of our relationship couple times. It seems that as I can't believe someone would really love me it has been hard for me to show I love someone back. So it hasn't only been me thinking about wether my boyfriend loves me or not, but he has been thinking about the same thing. Luckily we were able to sort things out and we are still here, together.

Getting my ileostomy has been hard on both of us mainly due to my depression and very negative thoughts about it. I have tried to hide my feelings about it, as I wanted my boyfriend to form his own opinion on ileostomies without my bad influence. But now that it's here I can't hide my feelings anymore. But I can say that my boyfriend makes everything a little bit easier for me. He has even helped me to clean my stoma and to change the flange almost every time. I think that's true love :) And he hasn't said anything negative about it, he hasn't even flinched. We talked about my stoma with him the other day and he just said that it was a suprise for him how easily and fast he was able to accept it and it didn't feel that bad at all when he saw it the first time. The only thing he struggles with is the fact that I'm in so much pain and I have to change the flange so often (2-3 times a day). I cry A LOT! And I have even once screamed and thrown all my stoma supplies on the wall in the middle of the night as I had to change it... He never said anything else, except that he loves me. Seriously I woke the man up at 3 a.m. screaming and crying. He woke up, came to help me and when I finally calmed down and we got back to bed he said "I just love you so much" turned away and went right back to sleep. Now if that isn't love I don't know what is!

No I'm not saying he is perfect or that our relationship is perfect, it's not. But I'm really lucky to have such on awesome companion in life from whome I get support and most of my strength. I'm not sure if I'd be here anymore without him. Life is a struggle but as long as you have the right people around you, you can do anything :)

My ileostomy

I shall start by telling about my ileostomy. As I said in the first text I wrote I am not happy about it. It has nothing to do with the bag itself but rather the stoma. For some reason my small intestine was too small to pull enough on top of my stomach, so this meant that the stoma itself is really low and partly even under my skin. Very painful! The surrounding is filled with wounds as the feces get to the skin all the time and no flange/wafer has helped the situation. Now I'm in a good place in the sense that things are getting slowly a bit better with the wounds. But the biggest and most painful is at the opening of the stoma which meand the stool comes to my skin all the time and there is nothing I can do about it. The stinging is crazy and I really can't see myself living with that pain for the rest of my life.

I spent two weeks at the hospital due to my surgery. After first 5 days I had to have another surgery as the surgeons had noticed a hole inside my surcigal scar that was leaking stomach fluids out. So that had to be taken care of. After this second surgery I was horrified to wake up as I nad NG tube down my throat! Man I hate that tube so bad! it's like legal torture and so bloody painful! Anyone here who has had any help with NG tube? Grr it's horrific thing! Though of course it's not really there to torture me but to help, it just normally just makes me feel 100 times worse.

After the surgery itself I was almost painfree, thanks to my anesthesiologist who figured out a way to numb my stomach without using epidural (which I also hate). So I was super happy about that until 2 days after the surgery I was given the permission to eat food... OMG the cramping pain was so bad I don't think I could even imagine anything worse. It was like someone stabbing me with a hot knife. I told the doctors the pain was so bad that if I had a knife on the counter I'd stab myself. Well all the pain meds the gave me did NOTHING for the pain. Because of this I also ended up spending more time at the hospital then I normally would. 

Anyway when I was released from the hospital the cramps stopped for a while and after few days they came back. I also started experiencing nausea which I still have. All this is normal I'm told...  So not to make things too easy I still have really bad cramps every time I eat. And since in my country pain medication (except for ibuprofein or parasetamol) is considered as drugs, they are very rarely given for pain unless it's considered extremely severe. And of course some little cramps in your stomach are nothing, so I should just keep quiet and struggle trough the way I see fit. But the cramp pains are taking every ounce of my energy that I'd need to change my flange 2-3 times a day. If I didn't have the cramps I think I would be a lot more positive about this whole thing even though my ileostomy is not an easy one. But right now I just sleep, try not to eat and change my stoma stuff.

I would so like to be one of those lucky people who say that ileostomy is the best thing that happened to them but I just can't, and that makes me angry too! I feel like a whiny little child with my ileostomy but at least I'm a live! Then again, there are times, when all the pain gets me, that I wish I wasn't :(

At least I have this little girl to keep me busy :)

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 :)