30 October 2013

So, I've done OK today.  Felt like I was going to need the washroom all day, but it was pretty tame since all I ate all day was a bit of raspberries and blueberries.  Less than a cup.  It's almost 6:00 p.m. now though and I ate some fried up hamburger with bar-b-que sauce.  That should cause some problems.  I don't want problems, but I've got to eat and cook dinner for my family, and it smelled SO GOOD when I was cooking it, I wanted to taste it.

I got my hair done today.  The hairdresser said I was very very VERY skinny.  She would be too if she had Severe Ulcerative Colitis, I'm sure.  Unless, of course, she took the medication.  I would guess she would be slightly pudgy then.  Prednisone is a crazy drug.  The side-affects are frightening.  Hair loss, joint pain, bleeding of the stomach, thin, fragile skin, osteoporosis, diabetes, Cushing's Syndrome, Low Amount of Calcium in the Blood, Dry Skin, High Blood Sugar, Puffy Face from Water Retention and there's more.  I take it anyway if I get bad enough to be admitted to the hospital. 

29 October 2013

I was feeling brave today as I had a pretty good night night before, so I ate breakfast and a snack before work.  I figured since I got the blood under control, I would naturally get better and be able to handle food.  So my entire work period I had episodes where I thought I'd crap myself.  I even said "I have to go to the washroom" because the urgency was so powerful, and then I didn't have to go as I was walking towards the toilet.

When I arrived home after work at 8:00 p.m. after I ate pot-stickers for dinner, which was dumb, I loaded the toilet bowl with what felt like everything I put in my mouth both solid and liquid over the past two days.  It happened about four times.  Everything was turned to liquid in my digestive system and evacuated at the end of the day.  I don't even know if any nutrients were absorbed in my body, because it doesn't seem like there were as everything seems to have landed in the soup of the toilet bowl I made.  I've been pooping all night and it is now almost two a.m.  I haven't slept yet and I have to wake up at 7 a.m. and get my daughter off to school and wake up my other daughter so she can do her school.  Then I have to go to work.  So, I would imagine eating breakfast tomorrow would be a horrible error on my part.  I just feel so much stronger when I can eat something during the day.  Otherwise at work I feel like every effort is a tremendous one and sometimes I feel like I might start crying from fatigue.  My body ached horribly all night tonight.  I just drank a small glass of grape juice and my tummy is rumbling from that which means I'll be having another trip to the washroom in the near future, which means, why bother going to sleep at all?

So, if no one reads these blogs ever, that's fine.  I do feel better being able to say how I feel and document what it is like to have UC so the doctors can figure it out.

That's another thing.  The doctors seem pretty dumb when it comes to UC.  I know they know much more about the body than I do, and I know they know more than I'll probably every care to find out about the digestive system and everything, but they are so dense in that they think they are so right about their opinion when a great deal of the time they are wrong and causing damage to people by giving them stupid advice because they think they know everything.  They don't know MY body.  They know what they studied and they maybe know other peoples' bodies.  One "expert" told me to eat apple sauce, which is POISON to my body.  Now this advice would be fine and I wouldn't care if it were my mom, my brother, my Aunt, my friend who told me, but because it was from a doctor I'm under some kind of obligation to listen, which makes it a threatening situation, especially if I'm in the hospital.  That's a total nightmare.  "Well, you better listen to me, you're just crazy if you don't." You try to tell them, and they just don't give a crap, like you haven't even spoken, and if you actually insist on your own opinion, you're off-balance and nuts.  When it is actually the doctor who is wrong.  Those are scary situations.  Twice in the hospital I was hooked up to the wrong IV bag.  I am the one who alerted the nursing staff as to the error.  It wasn't life-threatening, just a lot of sugar was being pumped into my body to fatten me up.  I don't know what the other bag was hanging from my IV pole, but it was the wrong one as well.  The only good doctors I found were at Mayo Clinic.  I felt I could trust them and I felt like they really listened to me.  Unless I'm facing certain death, I'm never going to a doctor again unless it is a Mayo Clinic doctor who specializes in Gastroenterology.

25 October 2013

Wow, my stomach is better.  I thought it would never happen and that I'd have to go to the hospital eventually, but I held out, and last week I stopped the bleeding and now my situation with having to go to the washroom so often after I eat is actually lessening. It is still bad, but I can actually get food in me now!  Woo hoo!

24 October 2013

So after waking up every hour or two last night all night until around 6 a.m., I had to wake up at 7 a.m. to get Jacqueline ready for school.  She's my daughter in grade 1.  I was so tired.  Jacqueline refused to get ready, so we both just went back to bed and woke up again at 8 a.m. I got her up and got her ready for school despite protest from her.  It was picture day and she informed me when she returned that day from school that she didn't miss pictures - thanks goodness!

So I didn't eat anything all day until noon.  I had these turkey wrap pieces and three pieces of candy.  Now, at 4:33 p.m. I am starting to have pain in my chest and I am starting trips to the bathroom.  If I don't eat anything the rest of the day I may be able to sleep all night tonight - I hope.  I'm so glad I have a place to complain.  This way, anyone who doesn't want to know about this, doesn't have to read it!!  Plus, I get a chance to vent how I feel about what is bothering me.  I can also document it.



I was just looking online for famous people with ulcerative colitis.  Out of ten, two people had their colon removed, one died of colon cancer, a couple are doing fine on drugs.  John Kennedy had colitis and when they did the autopsy on him when he died they found that he was on a lot of drugs for back pain (unrelated?) and also drugs to control his ulcerative colitis.  I can't remember the rest of the details.

I have been able to stop the blood in the past week purely by taking the supplements and vitamins.  I hope this is a good sign and I will get better.

23 October 2013

I would really appreciate a break from the pain.   It is constant and never-ending and I am always aching and exhausted.  I return from work and crash.  I do get up to do what I must, but every second I can, I try to lie down.  I am so tired of being tired.  I never sleep more than two hours at a time because I have to get up to go to the washroom constantly.  Sometimes I have to get up to go to the washroom after I went five minutes ago.  I am so bone tired.

At work I won a good write-up for doing a fabulous job and always moving and working hard.  I usually don't work longer than a five-hour shift though.  Sometimes I work 7.5, but mostly it's five hour shifts.

I started crying when I got the write up because I thought I was in trouble.  I was crying with relief that it was good.  I have tried very hard in jobs before and gotten in a lot of trouble, yet I was trying very very hard.  I thought this might be the same situation.  Thankfully and mercifully, a great customer boosted my efforts by saying I did a great job packing their food.  Woo de hoo hoo!

I ache as I write this though.  I'm going to try my best not to eat tomorrow and Friday and maybe I'll be able to sleep through the night and be good for work, besides being weak from lack of food, for Saturday.

21 October 2013

My stomach is hurting.  I ate today anyway, but my stomach is responding to anything I put in my mouth including water.  Juice hurts, water hurts, food hurts.  Anything.

20 October 2013

I feel like I'm dying.  128 lbs now.  My stomach hurts all the time.  I ate something for the first time in two days.  Chicken pot pie (a really great one from Costco) and a slice of strawberry cheesecake. I've gone to the washroom many times in the past two hours since I ate.  Bloody runny brown soup is what it looks like most of the time now.  I thought I'd lose it at work and not make it to the washroom.  I never went to the washroom while I've been at work except for a couple of times. So it hasn't affected my work yet. I'm pretty sure I'll have to see the doctor soon.  I can't control how much weight I lose.

18 October 2013

So, my stomach is still quite bad.  I went shopping today, not meaning to, but my 16-year-old wanted me to take her and her friend to the mall.  I brought my 6-year-old as I had nowhere else for her to go and I like taking her with me.  I tried on a size six pants thinking they would be way too tight and there was a sale, and I have no pants that fit me other than jeans and sweats.  So the size six was HUGE on me and I didn't even bother trying on the size 8 that I brought into the dressing room because of this.  I held my pants up and ran out on the floor to get a smaller size.  The smallest size next to six was zero.  Trying anyway I took them into the dressing room since they were a good sale and I thought I would try anyway.  They fit perfectly.  Wow, size zero fits me! That's frightening.  I got a couple of medium shirts that were too big, but the arms were long enough.  Any shorter and my sleeves would be too short, so I had to go with medium.  My stomach is doing OK today, but that's because I barely ate yesterday and I had a couple of spoonfuls of rice today and that's it.  My stomach still hurts anyway though even though I didn't eat almost at all.  It would be far worse if I ate though.  At least I can do things and not just hang around the toilet.

15 October 2013 Late late Evening

My stomach hurt very badly at work to the point where I was thinking I might not be able to work.  I didn't go to the washroom my entire shift for five whole hours (amazing) but that could be due to the fact that I didn't eat most of the day before and barely drank and didn't eat or drink anything today.  I had a dinner appointment with a friend from university at Granite City for six o'clock.  She doesn't understand Ulcerative Colitis at all. I felt horrible not eating in front of her at this restaurant.  Our waiter was not good, but he was very friendly, so at least that was nice.  Anyway, so I ordered french onion soup and an asparagus pasta dish.  I also had a hot chocolate and water.  I ate the whole french onion soup, minus the onions.  It was a very small bowl and a rip-off.  $4 something for exactly one measured cup of broth with cheese and croutons on it.  I ate HALF the dinner, which is very dangerous in my condition.  So so far, the repercussions are not too devastating, but the night isn't over yet.  We'll see what happens.

This is what I ate: 

Grilled Chicken and Asparagus Linguini

Chicken, prosciutto, garlic, asparagus, sun-dried tomatoes, oregano, onions, fennel, linguini, basil and pine nuts.

Totally jumped off the deep end on this one! Like I'm asking to die or something.  I was thinking nutrition when I ordered it and ignoring the fact that I was going to try not to have gluten, because I'm pretty sure fettuccini has gluten in it. I just wanted to be normal and not make my friend uncomfortable.  I didn't feel hungry at all, nor did I particularly enjoy eating anything.  My sense of hunger dies when I'm this sick, on top of that, I know it will hurt terribly later on.

15 October 2013

I am in a lot of pain all the time.  My desire to eat and drink is completely gone and anything I try to put into me because I know I should eat and drink turns to liquid and comes out my rear end.  I lost two more pounds.  Usually I'm 155 - 160 and I'm 5'10.  Over the course of the last two years I've dropped to 135 - 140 and now I am at 131.  I absolutely detest going to the doctor like I would imagine a person would detest prison.  It's horrible.  Except they torture you at the hospital and in prison they don't.  Although, I wouldn't know thus far about prison for sure, but I think I've heard enough to have it be pretty accurate.

If I get to 115, I'll go into the doctor and take their horrible medications.  I'll also go into the doctor if I get toxic mega-colon or if my temperature reaches too high or anything along those lines.  I have to go to dinner tonight with my friend from University and who I worked with at a Pharmaceutical research company.  So much for things going well, because drinking anything will be torture let alone eating.  She's surely going to think I'm anorexic, but if I cave in and eat I could end up in the hospital at this point and I don't want to cancel because of this as I do need some kind of life.

14 October 2013

I think hospitalization is coming soon if I don't get this UC under control.  Ate nothing all day and barely drank anything and I didn't feel a desire to eat anything.  I worked for five hours physical labor, then came home and had two glasses of juice and tomato soup with rice in it.  That soup and juice landed me on the toilet with terrible cramps. All day without food or drink and my stomach still hurt so much I could barely work.  I lost two pounds in the last couple of days, but I'm still healthy.  I wish I could just be OK without worrying about my stomach and ulcers and crapping.

Got this off the internet:

13 October 2013

Body aches are better today.  Just very tired.  My body still aches.

Hemorrhoids are at their worst today from crapping so much the past couple of days.  Had church today.  It was really great.  I love church.  I love the people there as as well and learning.  This photo is from Maplewood State Park last year I think, or the year before. I think...  Can't remember.

12 October 2013

Feel horrible today.  My butt hurts so much from crapping so much.  I feel like I crapped my body weight.  I barely ate anything so it must be crap from a couple of days.  My body is also aching TERRIBLY all over.  I wish I could cry to just let it all out, but it doesn't hurt enough to cry.  Just an unyielding ache that never ends.  I just want to sleep all the time and I am so exhausted.  I bought all the supplements I ran out of and I'm starting to take them again.  I just fantasize about sleeping all day.

I got a good job even though I was hesitant to apply since I would just have to quit anyway, but I don't know if I can do it sometimes.  It is pretty good pay and I'll just increase in pay as time goes by if I can handle it.  It is pretty physical, which normally I would appreciate rather than sitting at a desk all day.  Sitting at a desk is fine if you can get up whenever you choose, but sitting at a desk for hours and not being able to get up because you have so much work to do is not OK.  Moving all the time though is exhausting when your body aches anyway.  I thought I might cry at work, but I didn't.  Tough as nails I am :).

11 October 2013

Body is falling apart.  I started feeling well and didn't go out and buy new supplements when I ran out and my entire body is falling apart now.  It's driving me crazy.  I actually crapped my pants at work, but luckily blood came out instead of crap.  Luckily I was wearing a pad as it was the ending of my period, so I was covered.  Everyone keeps asking me why I didn't just go to the washroom.  The issue is, the urgency is so immediate there is no time to go to the washroom.