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About this blog

for some girls, life starts at 31!

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HildeAL

hi folks

just popping in to say that you're not forgotten, but I'm having problems with my computer at home. It can't take a lot of pictures and graphics, and that's why I have to save my capacity for things that are urgent. Is it possible to get access to this site through mobile phone or iphone? I'm considering buying an iphone soon, if I've got enough money...

except for my computer problems I'm doing great physically. I'm working for the deafblind organization in Norway. I still don't earn my own money at the moment, it's still unpayed work.

so how are you doing?

HildeAL

This has been an exciting and strange year. I feel that I’ve got my physical and social life back, it feels amazing, but I still have feelings when I feel stucket and I have this OMG feeling when I wake up in the morning and see my colostomy bag. The word “permanent” is the scariest part of the whole thing, there’s no way back and it freaks me out sometimes, especially seeing all my ostomy supplies but fortunately just for some minutes.

I wish that I could have had this surgery many years before; I feel that I have so many years to catch up. But most of all I wish that my doctors would suggest this for me so I didn’t have to ask for this, and feel like a strange patient who would want this, that really bathers me.

I’m very happy for my new life with my ostomy, but I still don’t feel comfortable telling about my ostomy to others. One thing I really wish is going to the pole, but I don’t feel ready showering among non ostomates. It’s so expensive this pool activity so on the positive side, I save some money.

Before my surgery I was scared that I would end up as a person receiving sickness benefits for the rest of my life. Ok if nothing could be than I’ve had to accept that, but if something could be done, it just feels like a waste of money for a person who just wants to work.

Some of the things that I still struggle with are my blockage from time to time. It has been difficult knowing what sorts of food that giving me the most problems, and how much I can eat with some of that food. I’m also not used to small meals, I tend to over eat, and that’s a big challenge I have to face.

I often think about some of my friends in this situation. One of my friends is going blind, there’s nothing anyone can do. Another friend is going deaf. The only thing that can help her is a cochlear implant, but it’s so expensive that according to the rules she’ll have to be totally deaf on both ears, then she have to stand on a waiting list for four years. If she lived in the US her insurance would cover it, but she doesn’t have all that money to go to the US for this surgery. It puts my life in perspective. I know they would rather have a colostomy instead of going blind or deaf. So I should be happy not being in their shoes.

This fall I have been working as a voluntary teacher for a school for grown up with different disabilities. I was really sad to live, but it’s time to go on to another place. I’m on a job training programme so I’m supposed to be in different places to see how much I’ll be able to work.

I also had a wonderful course in Italy with some members of my education association. That I would have to spend that much time in the bathroom like I did before my surgery made a huge difference to my stay. The last day in Italy staying in a terrible hostel was not a good experience but I still live- and learn.

I wish you all a wonderful new year 2013! I’m glad to know you folks.

HildeAL

November

blog-0308238001352496362.jpgLong time since I’ve been here. I have been busy working as a volunteer teacher in a special school for adult who needs extra tutoring. December 13th is my last day there, so I have to find somewhere else to work, with my education I’m not fully qualified to work as a teacher in this place.

This week I decided to work for the Norwegian ostomy organization. I have no idea what I’m going to participate in, but I think it will be very interesting to know how the organization work, and what doesn’t work. We have been told that our government wants to reduce the ostomy budget, which means that we can’t get all the ostomy supplies we want and need unless we want to pay more than our maximum prize for health care. I hope the economists haven’t seen the ostomy dresses made by Ingrid Anette (in my previous entry), they might think that’s how we use our ostomy bags ;)

I really miss going to the pool like I did before my ostomy surgery. But I don’t feel ready to shower in a public place, and I need to buy a swimming suit, can’t use the bikini anymore, it’s difficult to hide the bag underneath it. And then I get scared for having a leak in the pool. The bags should be safe, but what if......I know I’m a worrier, but have you had any problems being in the pool and sitting in the hot tub with ostomy bag?

My part time dog is Luna is on vacation in my apartment. Just remember at any point to "relax and go with the flow.....

HildeAL

blog-0425799001349041690.jpgHoliday

I actually have an autumn holiday, I haven’t had such a holiday since I was a school child, but now that I’m working in a school for adults, I get the teacher’s benefits. But what am I going to do this week? I have to check with my other friends who work as teachers in the kindergartens, if they have such a holiday as well.

But I don’t really need or want this holiday. I’ve finally started this job project as a part of my back to real work plane, and I like being busy with ideas and projects. I’ve have had so much spare time before this job, that I don’t want a holiday before next year :)

This month I was on a motivation seminar with this woman ( ingrid Anette Hoff Melkersen....) She and an ostomy nurse travel around Norway with her show called “proud and fearless with ostomy”. She talks about her life with Crohn's syndrome, how it was like being 15 and spend the entire time in the bathroom when you’re should use that time with school and friends, how she deals with her ileostomy and her three little kids who think that all the other mothers are strange because they don’t have a bag on their stomach.

She signed up for a photo competition and became number three among all other women who wanted to be named as “Norway's finest lady”

The dresses are actually made from ostomy bags

posedobbel_960974p.jpg564710_10151194170966072_2118575991_n.jpg

HildeAL

The first man on the moon is dead, Breivik is sentenced to 21 one year in prison, and I’m looking forward to my trip to Rome in September

First of all I wonder what to wear when I want to swim in the pool and afterwards. Should I wear my bikini shirt all the time while I’m working on getting tan, or should I just show my ostomy like it was the most natural thing in the world? I’s impossible to hide my bag completely.

I’m looking for ostomy bags, one piece with no windows showing my poo. There’s only one pharmacist who knows anything at all, and she’s busy. I can’t understand why the others working at this special pharmacy with ostomy products are so incompetent. They know almost nothing about ostomies, so I have to consult with other ostomates.

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May you rest in peace Neil Armstrong. I’ve always been fascinated about time travels and moon travels, so to honour you, I want to go there too- as the first one with a colostomy! So do you want to join me on this ostomy expedition? I see this as a great opportunity to educate people about ostomies.

HildeAL

thursday

I’ve given up my irrigation project. I’m only poo free for15 hours, and I don’t want to spend all that time in the bathroom just to feel bloated and nauseous afterwards. But when I’m going to Rome I might consider it, just to avoid having to change my bags at the airport and before the security check. I rather not have any questions about my stool at my stomach in such an occasion.

This morning my neighbor was knocking on my door, complaining about the noise coming from my apartment, she said she could hear everything I did. I feel a bit paranoid. I wasn’t aware of my noise, so I have to be quieter in the future.

My father is sick, with heart problems. He’s going to have a hip replacement this month after waiting nearly a year to have this procedure done. Now this private clinic won’t do this operation, because he’s developed high blood pressure and clogged arteries in the meantime. So he’s referred to a big public hospital and has to wait 6 months for his surgery. And his pain is getting worse, and we have no idea what to do here. And now this hospital won’t operate on him while he’s on medication for high blood pressure. It’s a frustrating situation. And we got one of the best welfare systems in the world.

HildeAL

Irrigation!

I irrigated last night, and this afternoon there’s a little poo in my bag again. So I hope that’s it for a while.

I’ve been four hours in the forest today, doing some orienteering. I found two posts, and God how I feel clever today! It’s a boost for my self-esteem. And if I don’t find it I get a lot of exercise.

This last week there’s been massive search for a 16 year old girl called Sigrid who’s been missing since last Saturday. Only her cell phone, shoes and one sock is left in the area where she disappeared. There are volunteers searching every spot in Oslo, trying to solve the mystery. I haven’t seen such an engagement for a missing person ever before. So if you see a blond 16 year old girl with no shoes and only once sock and a brown leather bag, you should tell us!

HildeAL

How long does it last this time?

I like being irrigated, but I hate the process. It’s really disgusting, seeing the poo coming out of my stomach. And I don’t know when the emptying is completed. Last time I had a rush just the minute after I decided it was time to finish. And it all became a mess. Now I know that I should always have some water left in the water bag- to clean the irrigation bag- to avoid even more mess. You live, you learn....

HildeAL

Some days I have a bad hair day, today I have a bad ostomy day. It doesn’t feel that bad wearing an ostomy bag as long as it’s not totally filled with poo. But today I had to change twice after breakfast. I should be glad when my bag is full, the alternative is worse. I’ve been struggling with obstipation for so mange years, so not having it for a while is a great relief, even though it feels like I have poo all over me. I don’t feel attractive anymore.

My future looks so much brighter now with the ostomy than without. But it still I wonder. When that time comes to find someone to love, how would that person react to my bag? Will he think that’s nasty? Will he still find me attractive?

HildeAL

I woke up with nausea today, and I know I have some sort of blockage or just painful obstipation. Did I eat something I should not eat? Didn’t I drink enough water, or is the explanation somewhere else? According to many tips about blockage I should stop eating immediately after realizing I have a blockage. But I’ve never followed that advice, but maybe I should?

I’ve realized that I’m very sensitive to Sugar and fructose. When I have enough of that I get a headache, I have to pee a lot, I get tired and irritable and I experience a terrible hunger, that doesn’t stop even after eating a large meal. I read somewhere that large amount of vitamin B can be really benefitual for this problem, so I hope my GP will agree to let me have a B12 injection, even though my blood samples doesn’t show any lack of vitamins.

It looks like it’s going to a rainy, cold an boring summer in Oslo this year. And I haven’t really any exiting things to do. I receive sickness benefits, so as part of that I’m obligated to follow a” back to work” program at a centre for people with different kinds of disabilities. The ultimate goal is to find a job that it’s fitted for my health and capacity and receive normal salary, but until that time I have to take part in this program- with nothing to do. It’s like being in pree-school, with teachers who just spend their time behind a desk in the office. The only thing I do is to teach Norwegian to a fellow participant who’s legally blind. I’m not a qualified Norwegian teacher, but I hope he’ll be more qualified for a real job, when that time comes.

I’ll start my new position in the middle of August, until then I have a lot of free time. What should I do? Any suggestions? Most of my friends come from other places in Norway, and will be going home for the summer holiday.

HildeAL

Ostomy visit

Today I had a nice home visit from two women from the ostomy peer support. The woman at my age has an ileostomy and her mentor has colostomy. So I learned from both of them.

I’m very disappointed that my own ostomy organization doesn’t have discussion forum like Oland. They don’t have enough time and money to make something that can actually be useful. I know we’re a small country but being able to chat with other ostomates from my home country would be great in addition to Oland:)

HildeAL

Hello Sweden!

Looks like I’m going to Gøteborg (Sweden) this weekend. My friend is Swedish, and will be going there to visit her brother on Sunday. She doesn’t know the city any better than any of us, so I’ll use the opportunity to look for cheap clothes and groceries. I still receive sickness benefits so I’m quite poor according to Norwegian standards-but hopefully not for too long.

Tomorrow some members from my ostomy support group will make me a visit. I know a woman working as a mentor for ostomates who want to do peer support, and she’s mentoring a woman who’s soon ready to make visits on her own, but needs some more supervision. Unfortunately she doesn’t have a colostomy like me, but an ileostomy. They don’t have enough people at my age with colostomy. But her mentor has colostomy, so I will gain experience from both of them.

I’m seriously thinking about writing an article to the Norwegian Ostomy Organization and tell about my story and how my life with an ostomy has improved my life. I just can’t understand why some surgeons and doctors think that this surgery is so drastic that they hesitate to ever discuss it, when they know that living like I did was not much of a life. I wonder if it has to do with their pride as doctors. Would saying yes to doing this surgery mean that they have failed as doctors?

HildeAL

My colostomy was born on March 16th 2012. Even thought my life is so much better than it used to be, I get these moments when I realize: I have a permanent colostomy. The word permanent is very scary. And when I look up at my shelves and see all my boxes of ostomy supplies, I feel trapped. Sometimes having a colostomy feels like always carrying an insulin pump, you never know when you need it, and without bags....

I don’t have so many things to do these days, so I have followed the Breivik trial closely. I don’t want to hear about the sorrows and traumas, but I’m rather interested in the psychiatry part. And I really hoped that I could be more educated about mental issues and criminality. But like all others the psychiatrists included- we are confused. Of course our Breivik is a special case, but I didn’t really know that all professionals had _so many_ different opinions on how to understand and interpret the criteria for schizophrenia and psychosis in general. In many ways psychiatry seems to be the new religion, scholars will determine if you’re nuts or just “normal” with dissocial behaviour.

Some days ago I had a meeting with a school for adults with special needs and I will start working there in August! I’m really looking forward to do something important and then I’ll find out how much I’ll be able to work and hopefully earn my own money, not only receive sickness benefits.

HildeAL

blog-0362073001338835643.jpgI bought this stoma cover the other day- and I love it! I just don’t like the sight of my stoma bag, so now it just feels like I’m having a pillow or a funny pack on my stomach.

Yesterday I had a painful blockage. I realize that I haven’t really had a blockage like that for months. It was so painful and I was feeling sick. I started irrigating, but it hurt, and I sat in the bathroom for almost 90 minutes. The rush wouldn’t stop so I had to put on an Ileo bag, but then I started ballooning. It was not a nice day and night :(. But today I feel better; I didn’t have any poo until now. So let’s hope the blockage is over for now. I ate some cucumber the day before, maybe that’s the reason? I hope so. Then I know what to avoid next time.

HildeAL

blockage

Woke up today with pain in the butt. I had steak for dinner yesterday. I haven’t had that kind of food on the menu for years, but wanted to celebrate our constitution day, and national holiday on May 17th. Last year I ate nothing due to stomach issues, this year I just wanted to eat everything.

I wish I could eat everything after the surgery, but I still have some restrictions. I react to dairy products, and sugar makes me tired and blunt. I get the same reaction with fruit and fructose.

I remember having blockages for days before my surgery. It took my stomach a week go back to normal. It wasn’t just the pain but the uncomfortable feeling that was the worst part.

I’m having a fever, my throat and ears hurt, but according to my doctor I’m just having a “normal” cold.

Right now it feels like my stomach is above to explode :(

sorry for my whining and complaining.

HildeAL

And I have tried irrigation for the first time with help from my stoma nurse. It was a strange feeling, seeing all the water and poo leave from my ostomy, without going through my anus, as it did before. I was a bit worried when leaving the hospital and not knowing if there would be a major output from my ostomy. But it went well, no more poo since then.

I received a letter from my GP’s office, that I lack vitamin D. I have to start eating fish, or just wait for the sun.

HildeAL

Another cold day in Oslo .Some days ago it was summer, today it’ feels like autumn. . I’m being more optimistic about the future. I still not feel 100 per cent “fixed”, but I feel I’m ready to start some working. I receive disability benefits, and have worked some hours a week as a volunteer, but I don’t get so much social activity that I feel I need to be happy, so I’m doing some research on where I want to work in the future. So in the first place I will work without normal salary but I’ll still get disability benefits. Later on, I might be on my way to earn my own money.

Before having my colostomy surgery I was an active swimmer. Even if I feel more confident with my stoma, how would I feel in the swimming hall? Will I ever feel confident enough showering with “normal” people? On the positive side, I’ll save a lot of money by not going there. It’s very expensive to swim in Norway.

HildeAL

Alone

A lovely bright and sunny day in Oslo. Yesterday I had to put my winter coat on, today I walked around in singlet and shorts. But my feet are cold, it feels like my blood circulation doesn’t work today.

I miss talking to other ostomates in RL. Of course I can always go on the internet, but I really miss the physical meetings. There’s not much activity in the Norwegian ostomy organization at the time being. There are activities for kids with families, and teens and adolescents to the age of 30. After that you’re supposed to manage on your own until you become 60 years old, they have their own meetings in elderly centres. I don’t want to feel bitterness, but I really want to catch up with all lost years, due to my condition. So not being included in the ostomy program sucks.

There’s another organization too. An organization for people with digestive disorders. I’m still a member, but I feel really left out. 90 percent of them have Chron’s disease or Ulcerative colitis

I don’t have any of those, just a colon that wouldn’t work well. Even if many of them have ostomies, I feel so different from them that it’s no use going to meetings. I felt so lonely when I was there.

There will be no more updates from Breivik trial before Thursday. So tomorrow I have a good reason to do something useful, not looking at the television all day long.

I wonder why my colostomy bag doesn’t smell anything when I change to a new one. I won’t complain, but is this normal? It doesn’t really smell poo like it smelled before.

HildeAL

back to school

Back at school –with my colostomy. I’m back at my Russian course, having missed 4 sessions.

My biggest fear would be having a leak in the classroom, with ten people I hardly know, and a strict Russian teacher. It didn’t happen today, and I don’t know if it will ever happen, but just the thought of that gives me nightmare. Before I arrived I had to check my bag several times, make sure it was sufficiently fitted.

And then I started getting nervous about the sounds. I don’t have many sounds, but in a very quiet classroom it gets very embarrassing

And then I also get very nervous when I’m there. Russian lessons make me nervous.

I have more freedom now that I had before, but I’m more anxious about leaks and sounds.

What do you do if you hear some sounds from your ostomy? Do you explain where the sounds come from even though you don’t even know if they have noticed it?

I wish I could buy ostomy bags with different colours. I want to wake up with a green bag tomorrow! Any chance my wish can come true?

HildeAL

I feel so dirty

blog-0642545001334590365.jpg.

when I wake up with a poo bag. Sometimes it feels like I’m having a diaper on my stomach, which just doesn’t smell. I haven’t got used to this yet. Because of my illness, I have barely had a boyfriend. If I find someone, how will that person cope with this?

I went to the circus today as a part of my daily walk. I saw some parts of the trial on TV. It just feels so unreal, like a TV commercial, a parody – but it’s real! The man is obvious a psychopath, but he doesn’t look like one. It just feels like he’s an evil alien from another planet.

HildeAL

Today was my first ostomy change in a public bathroom. I always get so nervous. My biggest fear is realizing that I don’t have any more bags left. I’m one of the most absent-minded people on earth, so let’s hope that never happens. But I’m very glad that I have a colostomy and not an ileostomy. With an ileostomy the chances of leaks would scare me off. Of course I’ve experienced that my bag didn’t fit properly, but there was not big leaks with change of clothes and everything.

It’s a strange and new feeling sitting on a café, eating cakes without having to deal with all the smelly odors coming out of me. It was such a big problem, that I wouldn’t eat out anymore, and even more embarrassing explaining my problem to others. So the filters come in handy.

I’m mentally preparing myself for the Breivik Trial next week, our new mass murder who has sat Norway on the map. I just don’t want to hear or read about all the details. I just don’t want to know how the kids and adults were massacred. But it’s hard to escape. I just can’t avoid the television for ten weeks. The whole trial is going to be a very, very bad and sad circus.

HildeAL

ostomy nurse

First meeting with my ostomy nurse after the surgery, the 16th of March. I’ve made a list with questions for her. I’m curious with the Irrigation procedure, when can I start?

I’m preparing to move back home again. I’ve lived with my parents since the surgery, but it’s not an ideal situation, I miss living closer to the city. So I hope I’ll be home during this week. But it stills hurts when I’m walking; it feels like I have open wounds in my stomach.

Mentally I’m down at the moment. I have mixed feeling about my new colostomy. I’m glad that this has given me a new freedom in many ways, but I just hate having a bag with poo on me. I think it’s disgusting. Sometimes I could just wish this was not my own choice, so I could just be angry with the surgeons and nurses when I felt like it.

HildeAL

welcome

to Hal's blog.

Hi :)

I’m Hal. I’m a 31 year old teacher who just recently got a colostomy. So here I write about my life with my colostomy, ups and downs, and all the other issues I meet in daily life that doesn’t have anything to do with my ostomy.