Sunday, August 26, 2007

Quick update from the hospital

I was doing absolutely great until yesterday. I am not really up to writing much, but I wanted to leave a quick update, since I haven't been in contact with anyone except for my mom through my sister.

As you know I was surprised with a 1 step surgery rather than a 2 step. That is great in many ways, especially in not having to deal with a second surgery and second hospital stay etc.

My bowels have slowly started to wake up, but nothing and I means absolutely NOTHING IS COMING OUT!!! The pain is intolerable and is driving me crazy. All I can really do is wait and hope that the gas and other stuff will find its new way out. The best thing to do is walk, walk and walk, but it has been almost impossible since I have been so nauseated and in pain. I lay like an old lady and moan in bed most of the time, thank God for that morphine pump!

I recently got a different and hopefully anti nausea medication, so I can walk some more. Throwing up after a surgery like this would be excruciating, so I am really scared of that happening. The doc said that in the worst case scenario he would have to intubate the pouch (read: stick a hose up my ass) if things do not improve. I have started to bloat a bit and get distended, so I am trying my best to get this resolved fast. Pain is not fun, that is for sure!

My sister slept over one night, and Ken stayed the day today. But Ken is not very good at this kind of stuff, so I much rather have Carina here (sorry, I love you so much Ken...)

So that is my situation. I am looking at maybe another week in here. At least this is a nice department with only 11 beds, so nice and quiet most of the time.

I know it will all be worth it in the end, but right now it majorly SUCKS! Oh, and Sarah is doing great, she is being a very good girl my little cutie!!!

Tuesday, August 21, 2007

Hello from the hospital!

Due to generous amounts of pain relievers I am giving you this update. I was in for a HUGE surprise! I did not get the step 1 of the 2 step J pouch surgery, I got a 1 step only! This is majorly huge! It means doctor Shore considered me to be in stable enough to have a one step procedure. This means NO ileostomy, no second surgery!!! On a fun note he also said my internal organs were very beautiful. Ha, ha!

The recovery will be much tougher, since I will have to learn to use the new plumbing while recuperating from major surgery. I am still hooked up to an anal drain, and I will not be able to have any food OR drink for a while. I can have ice chips, but I have 0 % appetite, so that is OK.

The surgery itself took 6 hours and I lost a lot of blood. All in all it is a lot better than I though it would be! The doctor and all the other personnel is SO nice, I am in VERY good hands. Due to this more severe surgery I will have to stay in the hospital for at least 10 days... Oh, and in the middle of being prepped for the surgery I was hit by a bad anxiety attack, out of nowhere... Wham! This was only the third anxiety attack in my entire life. Lucky I didn't end up with a stoma, because I couldn't concentrate on a word the stoma nurse said before the surgery!

Everything worked out fine, now I just have to recover... Below are some pictures from the surgery, look away if you can't handle it! I will get some actual colon pictures from the doc later... Tired

My sister giving me a pep talk afterwards

The incisions are not too bad due to a mainly laparascopic procedure.

Thumbs up!

In the prep room, getting nervous

I had (and still am) wearing special leg contractions that will help prevent blood clots. They get randomly filled with air, and the pressure is to mimic walking.

You can tell on my face I am not too happy. This is how an anxiety attack looks like!

Sunday, August 19, 2007

OK it is time!

This will be my last posting before the surgery. I just want to thank everyone for all the well wishes, I really appreciate it!

I can't lie and say I am not terrified, but overall I am OK. I think I will probably have a a hard time sleeping tonight...

I am really hungry (no eating today) and light headed. I only had water, a coke and some broth to eat, and I love my food, so it really sucks. The bowel prep sucks even worse! Imagine having to drink a glass of really salty water, with a hint of plastic. They tried to flavour it with lemon, but all that really did was make it into salty water, with a hint of plastic and lemon... Trying to drink that shit without throwing it all up is an art form in itself! I try to put a straw as far back in my mouth I can and hold my nose. Not. Fun. At. All.

So. Nervous. Anxious. Excited. Hopefully I will see you all A OK on the other side. I will update the blog as soon as I feel OK enough, it could be one day or seven, I have no idea.

Take care!

Saturday, August 18, 2007

Universal Studios

I am beat! We left the house at 7 AM this morning and got back at 9 PM. We had a great day at Universal Studios theme park in Orlando. I have walked so much my legs need a good nights sleep. The intense heat really wears you down too! I think my sister had a great time, this was her first ever visit to a theme park.

Sarah fell asleep in the car on the way home, and I was actually able to get he into her pajamas without waking her up, she usually always wakes up if I try to do that!

We got so much great shopping done on Friday, and tomorrow morning we are going to Target to look around, then some last minute groceries. I will unfortunately spend the later part of tomorrow doing a disgusting bowel prep before Monday's surgery (which means drinking yucky stuff to clean out my guts). No food tomorrow, and probably not for the entire next week either :-(

Talk to you soon. I am starting to get majorly nervous!

Friday, August 17, 2007

My sister is here!

Finally she is here! She hadn't slept much the two nights before her flight, or on the plane, so she was just a tad tired ;-)!

We still stopped by TGIF to have a quick bite, since we were all pretty hungry.

Today we have only one thing on the agenda: major SHOPPING!!!

I love my sister, she is so beautiful!

Wednesday, August 15, 2007

Doing some deep cleaning today

I turned on my "out of office auto reply" so now I am officially off from work until I feel OK after the surgery. I just got too much else to do this week. I have a large project waiting for me when I get back from my new Danish client, and he is aware it might be a few weeks until I feel up to it. Nice to know I have a good and easy chunk of work when I get back!

So today I decided to do some deep cleaning, continuing tomorrow. I took on the scary task of cleaning out a few closets. There were some stuff in there that were screaming of wanting to be donated to Goodwill, got a huge sack full of some really nice stuff someone hopefully can use.

Almost dinner time, time flies! Sarah and I ran over to Wal Mart to get a few things and had a quick lunch at McDonald's in there. I am trying to bulk up and eat a lot this week, since most people will loose about 20 lbs or so the first week after surgery. I am by far not that fat at 132 lbs and 5.8 feet tall, so that would probably make me extra weak. So I figured I would load up on all that stuff I normally don't eat, plus stuff that I really can't eat after the first surgery (due to the risk of blockages). So lots of Coke, chocolate but also veggies such as broccoli and lots of protein (supposedly good when healing). I added some zinc tablets too, since I have had a zinc deficiency on and off, and it is an important nutritional part when healing wounds.

Better continue cleaning for now!

Tuesday, August 14, 2007

Got a little wet!

I just got back from a long walk in the pouring rain - the dogs and I looked like drowned rats when we got back! I was wearing a jacket, but the rain was so hard it got thorugh it. Stan kept trying to turn around and go back home the entire walk, he wasn't too happy about it! It was kind of nice though, it is so warm and when you feel the water rush over your feet it is anything but cold!

I had to take the dogs for a nice long walk since I will be out all afternoon. At 2 PM I am leaving for St Petersburg to have my pre op tests done. I am not sure exactly what they are doing except the standard blood tests. If I have time I will scope out the hospital a little bit more as well.

Tomorrow I have planned on just doing laundry and some cleaning. On Thursday I am home alone, so I can do some more deep cleaning. I want this place sparkling before my sister gets here, I don't want her to have to do too much while she is here.

I have prepped the house pretty good. The freezer is full with food, lots of meat. My sister is on a low carb diet after quitting smoking. I really don't think she needs to loose any weight, she looks great! But since she really wants to stick to this diet I have gotten a lot of protein and other things I know she would like.

I had a little hard time figuring out what to do with Sarah next Friday, the 24th. She gets out of preschool at 11:30 AM, and Ken will be in Largo for consulting all day. Everyone I normally would get help from is out of state! Finally I asked my friend and neighbour Erin and she is going to pick her up and drop her off at home with my sister (since I will still be in the hospital). No problem at all! That is really nice of her since she got her own 4 year old AND a 6 month old to care for. I really appreciate her helping me out, she is a life saver!

Other than that I think I am pretty set. On Thursday I am cleaning and then getting a haircut, plus Sarah and I are picking my sister up at the airport.

On Friday we are going to be out shopping all day. I need to get a robe and some slippers for the hospital, you are suppose to walk the corridors a lot to get the bowels going, and the robe I have is way too short for that. I also need some new face lotion, I like Clinique for basics. They are having a "gift with purchase" promo going on on Friday, so that will work out pretty good. A nice lunch would be great too! I am taking everyone out for dinner Friday night (who knows when I will be able to eat normal food for a while, so I am stuffing myself!)

Saturday are going to be an all day event at Universal Studios in Orlando, that should be a lot of fun for all of us!

Sunday will be for last minute stuff in the morning, then I will have to do a bowl prep starting at 1 PM, which means I have to stay close to the bathroom the rest of the day...

Friday, August 10, 2007

Time to wind down a bit!

This morning I did the last proofread on the dyslexia project and sent that in. It was an ideal project, easy formatting, clear text, interesting subject matter. I wish they were all like that! The best part is I was able to finish in 5 days. Hey, $4,000 for 5 days work, not too bad!!!

So today I had an unexpected day off, just a few small work projects. I cleaned a bit, took the dogs for a walk in the very, very hot weather. It is in the low 90s, but with the heat index (counter in the humidity) they say it is more like in the low 100s. Very steamy indeed!

With suddenly having some free time I started thinking about the upcoming surgery again. I am happy to do it, since I know it is the right choice. Not only because the available treatments no longer work, but they say that after 10 years of ulcerative colitis you are at a dangerous high level of developing colon cancer. It would be difficult to monitor with colonoscopies alone, since that test only take random samples of the tissue, and it would be far too easy to miss precancerous cells. Dysplasia, the occurrence of precancerous cells, is usually an indicator for a colectomy, that is, a complete removal of the colon. And considering I have had UC for over 20 years and already shows signs of granulomas, the pre- precancerous stage... That would be a second strong reason to do it.

But of course I can't help worrying about it. It is after all very major surgery. I was reading some of the material I have received, and I was happy to see they had included some information of what to expect right before (as in the hospital), during and immediately after the surgery. So you don't freak out when you wake up.

So what I can expect happening when I wake up is that it will feel like I "got hit by a 18-wheeler truck" like a fellow UC patient who recently underwent the same surgery so bluntly said to me!

More, I will have all kinds of tubes and hoses in me. Of course there will be the IV. I will also get either an epidural for post op pain relief, or a morphine pump. I rather have the pump since the epidural makes you feel totally numb from waist down. Then there will be the oh so wonderful nasal gastric tube, that goes into your nose down into your stomach, mainly to remove anything from the stomach (to prevent nausea and vomiting, very common otherwise) I will also have a urine catheter, since the bladder will get traumatized and usually seize functioning for a few days (plus it will be almost impossible to get out of bed). I will get two drain hoses from inside my stomach to drain post op fluid and blood. Then the most lovely thing of all, an anal drain that will go into the newly constructed pouch to drain it of fluids and blood. Yummy!

I am sure it will be very painful, and I have no illusions of getting up and dancing around any time soon. I just hope I can be one of the average J-pouchers that can go home after 5-7 days without complications.

Sarah has always been used to going with me to different doctor's appointments, she even sat through a few biopsies (by mistake) when they cut off a few moles, and if anything she is very interested in anything medical. She loves seeing her doctor and be examined, and she loves reading (real) anatomy books which shows the body in different ways. She knows all about veins, skeletons and nerves. Probably pretty unusual for a 4-year old I think. So I have been prepping her about my impending hospital stay. I told her about what the doctor is doing (she already knew mommy has a bad tummy with a nasty boo boo inside), and how it will be just afterwards. To make sure she doesn't get worried we looked at photos of a person who just had the surgery, so she knows how I will look in the hospital, how my temporary ileostomy will look like. We came to the conclusion the little red knob sticking out, that is, the stoma, sure looks like a dogs little red penis, that was NOT my suggestion, she just thought the picture looked just like Bob the dog's penis when he licks himself, and she sure is right, it does look like a little red dog penis! Things that comes out of little kids mouths'... ;-) So I think she is pretty prepared, not to mention she is not unfamiliar with a medical environment or mommy being sick, so I think she will be just fine.

I will try to document the surgery and the post op experience here, most for my own sake so I can go back and compare and see if I have any progress in the recovery, which I hope I sure will, of course! I even asked the doc to take a picture of the colon after they rip it out; I just really want to see the fucker who has messed with me for so many years... ;-)

Tuesday, August 7, 2007

Big expensive bummer!

I am putting the last details together for the big surgery day. Stuff I want to be in order so I don't have to stress and things of more pressing nature. I even made my sister a "user manual" for our house hold, since she will be alone for a while and probably have no clue how all weird American appliances and such work... Plus Sarah's routines and so on. Just trying to figure out our TV with 400 channels and all kinds of DVRs and DVDs hooked up to it needs its own chapter!

My pre-operative testing is now set for next Tuesday, so that is all taken care of. I also made sure that the doctor and the hospital are in my insurance company's network, I don't want an expensive surprise after I get home. I also made sure that the home nursing system my doctor wants to use for my home care afterwards is covered. All check and accounted for!

Then for the big bummer. I will have a temporary ileostomy (bag on my stomach for waste) for 6-16 weeks or so. My freaking insurance company is one of the nation's very few who do NOT cover these appliances (that is what the ostomy lingo is for the supplies)!!! They consider the equipment "disposable", and for some bureaucratic reason that makes it a no no for coverage!!!

Apparently I am not the only one appalled, the United Ostomy Associations of America have been trying to put pressure on United Healthcare to include this in its coverage, but so far no luck. UH is otherwise a great company to deal with, no problems so far, and I am sick A LOT, so they probably don't like me too much ;-)

I will be getting a starter set of supplies from the hospital I am sure, and I know I can also call most of the major supply manufacturers for plentiful free samples. But the stuff is REALLY expensive! So that is a very expensive bummer... I am talking hundreds of dollars. Sigh!


It is so weird, most of the large project I am currently working on (and I am kicking ass, by the way, might finish a week earlier than I thought!) is different hypnosis sessions.

I have done so many now I feel very relaxed... And I am drifting deeper and deeper into my subconscious mind...

Ahm, where was I? Well, is this going to mess with my mind or what??? Interesting stuff though!

Now, stare at this picture and read under the picture very carefully:

You're growing tired. Your eyelids are getting heavy. You're feeling very sleepy...

Sunday, August 5, 2007

Swedish bread

I love cooking and I am pretty good at it. I can bake all kinds of sweets like cookies and cakes as well. But when it comes to regular bread I am to no use at all. It's edible, but usually not very pretty to look at.

So many years ago I invested in a bread machine, and this thing has brought me many juicy, fragrant loaves of joy. I often try to bake Swedish style bread, many with rye or old fashioned "limpa". But it is hard to find recipes of Swedish bread adjusted for a bread machine.

So for Christmas I usually have my mom include some bread mixes from Sweden in her annual Christmas package to me. Kungsörnen have one called "Sverigelimpa" that I love. One package of mix is enough for two loaves. Yummy!

When I was in Sweden this summer I stocked up on several different kinds of bread mix, and I was lucky to sneak them past customs... So today we are making Swedish "limpa". Next week maybe spelt bread? Love it!

Bob the Adventurous!

The new, slim Bob! 7 years old and looking good!

Yesterday I worked as much I could at the same time I got a lot of laundry done. Ken had to see a client, and when he got back he did a lot of yard work. Sarah helped him a bit towards the end, and I guess we never thought about the fact she had left the patio screen door open. I even remember telling Ken to go and close it before he took a shower.

After his shower we sat down and had dinner, and after that I got Sarah ready for bed and we were in her bed reading Bamse when we could hear Bob barking in the garage. It would not have been the first time Bob sneaked out in the garage and ended being locked out there for an hour or so before we missed him. But he was not to be found! We looked through the entire house, sometimes he can hide in the oddest places. But I swear that bark had sounded like Bob's, and that it had been distant.

I took one doubtful look at my husband and said "You don't think he could be...?". Ken opened the front door. In bursts Bob, high on an adrenaline rush, running through the house like a crazy roadrunner!!!

We realized he must have gotten out when the screen door had been open, which meant he had been outside for a few hours! Who knows where he had been! Bob loves to be free and he had probably been all over the neighbourhood. It is a miracle he didn't get run over! Or eaten by an alligator... he was covered in mud, which told us he had been in one of the many lakes around our house. He promptly got himself a bath and then slept like a stone the rest of the evening.

When we had him boarded during our vacation Bob lost 3 lbs, that is quite a lot on a little guy like him! (He really needed it). It was all in thanks to the fact that there were no food he could steel! He looks great and have more energy now, so maybe he just wanted to test his new, slim self...

Oh to have had a camera mounted on him when he was tearing around the neighborhood... freaking dog!

Friday, August 3, 2007


I just accepting a very large project. It isn't due until end of September, but since I am having surgery I am looking at it as if it is due in two weeks. It is another Danish agency (this is my third Danish agency - where are they finding me?) They are the official translation vendor for a large company based in Germany that help people with dyslexia. Very interesting stuff! The job itself is going to be two folded, the first larger part of 40,000 words are to be done now, and then in a few months I will do another 30,000 words or so. So I am essentially doing 1 month's worth of work in two weeks...

I feel very good about it though, the text is simple and very straightforward, which means I can work without doing a lot of research. Sarah will be in school full time until my sister gets here the 16th, that should be enough time for me to finish. I type very fast, and when I get into "the zone" I work very fast. Especially when the subject matter is interesting!

I just feel relived that I have been getting so much work lately, it isn't like I will get any sick pay while I am recovering... ;-)! It seems my company have really started to take off the last couple of years. I have been in business since 2000, and incorporated since 2001. Weirdly enough it seems I get more profitable work the sicker I am! Odd!

I am looking forward to get this project underway, it will be nice knowing I have some money coming in. I am making a $1,500 student loan payment next week to my student loan in Sweden. Lots of money, but I think if anything is worth getting in debt for it is a great education! Going to school and getting a degree have enabled me to get a great career, even though I have been so sick. I am really lucky! Have a great day everyone!!!

Thursday, August 2, 2007

In need of an ark???

The view out the front door

OK, since we got home from Sweden it has rained every day. And not just a little bit; no the sky has been wide open with regular intervals! Do we need to build an ark here soon???

Wednesday, August 1, 2007

***Sweden: July 14 ,2007***

Today it was time for the big BBQ party, a chance to get everyone together. "Everyone" in this case are my mom, Ken, Sarah and myself, Carina, Börje and Sandra, and my 6 aunts (Bente, Pia, Lotte, Gitte, Elisabeth, Ewa) and their immediate families. All in all we were 31 people. Lots of fun catching up with everyone! We started off by having coffee and cake, then most people went for a long walk while some of us started prepping a bit for dinner.

We had set up long tables in the outdoor carport my aunt and her husband have, in case it would rain later on. We barbecued all kinds of food and had a great time chatting.

Later in the evening when most people had gone home, a bunch of us moved the conversation to the outdoor patio in the front of the house. We enjoyed talking for many hours in the light of the fire sparkling in the fireplace. A memorable day!

Me and my youngest cousin, Kristoffer

Everyone enjoying their food

Just after coffee (Ken in red next to Sandra, my aunt Ewa in orange)

Coffee and cake time! We enjoyed both Swedish cake with whipped cream and strawberries, as well as Swedish "princess cake"

Everyone was in a good mood at this table!

Deciding who wants to go for a walk to a nearby lake

Ken and my two aunts Elisabeth and Lotte

Sarah with her second cousins Maria and Adam

***Sweden: July 13 ,2007***

This day we were busy getting ready for the big family barbecue that was going to take place the next day, but we managed to have my sister Carina, her daughter Sandra, Börje plus my mom Wivan over for dinner that night.

Aunt Gitte's husband Dan is on BBQ duty

My mom, Wivan.

Ken with a Swedish beer, which he really enjoyed.

Börje waiting for some food

Carina enjoying the beautiful Swedish eveining weather.

Carina, Sarah and I joking around

Sarah's cousin Sandra is reading Bamse for her

Everyone is happy after a great meal and the sun is starting to set (Sandra, my mom and Börje)

***Sweden: July 12 ,2007***

Today was my mom's (grandmother's) birthday. She turned 76, and looking at her it is amazing she is even here since she had a stroke and heart attack earlier this year. Except for a walker to aid her on longer walks (which she takes frequently) you would not be able to tell what she has gone through. She is a tough cookie! I managed to not get one single picture of her this day, probably because she never sits still, she is always up and about making sure everyone else is comfy! She had made awesome smörgåstårta, cookies and buns. She also had a yummy lemon birthday cake.

My cousin Sophia and her daughter Maria, 6 and her son Adam, 4 (a bit shy for the camera)

My dear aunt Lotte in tan in the front, right

Börje, Ulla my grandmother's sister, and Ullas granddaughter Sabina

My beautiful niece Sandra, 15 and sister Carina, 42

Some of us enjoying the delicious home made "smörgåstårta" (sandwich cake). Ken and Sarah to the front right.

Surgery set!

Think of me on August 20 at 10 AM (EST), then I am going under the knife!

I met with the surgeon yesterday, and he seems very knowledgeable. He didn't have to explain anything since I already knew all the details. We will have to be at the hospital early, and the actually surgery is at 10 AM. He expects the surgery to take 4 hours, which is pretty fast. I told him I was concerned with blood clots since I got one right after my last surgery, and then had two more in the following year. He said that is a concern anyway with someone on the operating table for that many hours, so they always give all patients a shot of blood thinners afterwards. That made me feel much better, because a DVT is painful to have, and I am sure I will have enough pain as it is...

So I am now waiting for the hospital to call for me to come in for my preoperative appointment, that is usually when they take your insurance info and do a battery of blood tests.

Sarah and I had a hard time finding the hospital since it was raining like crazy! I ended up in the wrong place twice before finally finding the right office. But hey, we got an impromptu tour of the facilities!

I also booked my sister her plane ticket, so she will be arriving on the 16th. That gives us a few days to do some shopping and also visit Universal Studios in Orlando fro some major fun! I figured, who knows when I will be up for anything like that any time soon... The day before surgery I have to do a bowl prep. It is very important the bowels are as clean as possible since spilled fecal matter during the surgery can cause dangerous infections. It is not as intense as before a colonoscopy, but you have to take antibiotics and massive doses of probiotics too, which makes sense I guess. Only clear liquids the day before. Man, I will be hungry! I won't get anything to eat the first few days after surgery either. They better drug me up good, I hate being hungry... ;-)

I got a lot of work to do, so I better get to it!