My Journey with Ulcerative Colitis

I realized the other day that it has been 7 years since I first started to show symptoms of ulcerative colitis. This disease is very difficult to live with as it interferes with digestion, can cause major blood loss and creates a great deal of fatigue. Here is a brief synopsis of the ulcerative colitis events in my life. Keep in mind that every day has been a struggle to deal with fatigue, pain, random fevers and ‘digestion upsets.’

• June 2005 – I had a number of symptoms that were strange. Mostly it was mucous, blood and thin ribbon-like stools. I was also spending more time in the bathroom than usual.
• December 2005 – I had my first colonoscopy. It was negative for any sign of ulcerative colitis. My symptoms had also stopped.
• February 2006 – the symptoms come back with a vengeance. Lots of pain, diarrhea, mucous and blood. My doctor started me on Asacol, which is a first-line treatment for ulcerative colitis.
• July 2006 – I saw my first gastroenterologist. He says I likely have ulcerative colitis and says I need a colonoscopy. He then shut down his practice before I could be scheduled. I didn’t know this so I waited 18 months as my symptoms worsened.
• October 2007 – I finally see a new gastroenterologist. He decides I don’t have ulcerative colitis based on one symptom of Irritable Bowel Syndrome[1] – which I also have. He took me off all ulcerative colitis medication and I became really sick. When I finally had a colonoscopy a month later I had really deteriorated. I had active ulcerative colitis in 1 metre of my colon. He was extremely condescending and rude to me. When I asked him about going on immune suppressant drugs[2] he said he would never put me on that medication.
• November 2007 – I developed an immune response called pyoderma gangrenosum. It caused what looked like an abscess by my eye that had to be lanced and then a huge abdominal wall lesion that eventually measured 10 cm by 10 cm. It was extremely painful. It took more than a month to diagnose. During that time they hit with me intense antibiotics that, in the end, did nothing. It was only after a wound care nurse figured it out that I was appropriately treated with steroids.
• January 2008 – I ended up in hospital for 2 weeks. I had dangerously low potassium levels due to diarrhea. I also had very low hemoglobin due to constantly bleeding. I was also in extreme pain. I ended up on prednisone for 6 months and huge dose of morphine that I then had to wean off of. I could not work for 6 months.
• November 2009 – I ended up in hospital again as my immune system had been wiped out by Imuran. I was in for week. I had 2 blood transfusions and spent time in reverse isolation.[3] This is the closest I have come to dying. Literally.
• July 2011 – I needed to take a sick leave for about 2 months. I was exhausted and really struggling. Likely it was all due to stress.

I have been back at work since mid-September of 2011. The last 6 months I have seen a steady improvement. I have been looking after myself very well. I am wondering if the addition of kefir to my morning smoothie is helping. Some people have had success with repopulating their digestive tracts with good bacteria. I have tried this with Florastor and VSL #3[4]. Perhaps naturally occurring bacteria from real food is better? I hope the upswing continues. I would love to have my life back.

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[1] I had colon spasms. I have always had them. Apparently, in his mind, this meant I didn’t have ulcerative colitis.

[2] Ulcerative colitis is believed to be the result of an overactive immune system attacking the colon. Immune suppressant drugs help to control the immune system.

[3] Everyone coming to see me had to gown up except for Deb. They let her do what she wanted.

[4] Both of these are ridiculously expensive.

Dispatches from the Swamp – the ‘Tuber Edition’

• Ruby (aka Tuber)[1] is doing so much better. Some of you may remember the post I wrote a couple of months ago: Fixing Ruby. Ruby had never known that human beings could give her good things in life. She has come so far. Gone is the sad little dog who wanted to hide in her crate all the time.[2] We now have a bright-eyed[3] confident little dog. Her tail is up and her ears almost stick straight out from her body. She loves life. She is following in the tracks of many dogs at The Swamp who try to kill the humans by sticking so close to their feet that we trip over them. She goes to the park and enjoys herself immensely. I would regale you with pictures but she hates the camera.
• My health has really improved lately. Sticking to a routine has really helped my fatigue levels. I no longer sleep in on weekends. I used to sleep 12+ hours on the weekend just to be able to work all week. This morning I was awake and up at 8:30, which is early for me. Clearly all of the things I have been doing to look after myself have worked. Getting back in touch with the things that make me happy and contented was a good plan. Luckily, I will likely never run out of things to crochet for people. I have started on a new Realta afghan for my best friend Joe. I am making it queen size, which means it is roughly 4 times the size of the last one.
• Piper has lost 2 pounds! This is ½ of the weight she needed to lose according to the vet who did her soft-palate resection last year. Her breathing is so much better even in this heat.
• The rest of the dogs are doing well. Ruby and Zoe are hardly coughing at all now on their Lasix. Kiefer seems to surviving the heat ok. He likes to lay on the cool tile by the front door or in the living room in the shade. If it gets much warmer I will have to set up the air conditioner in the living room for him. Sawyer is still cold. He is always looking for a blanket to go under.

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[1] Tuber as in potato. She is about as bright as one. But she is sweet, so very, very sweet!

[2] She still won’t sleep anywhere unless it is a dog bed.

[3] But very deaf …

Tech Review: Beolit 12

Beolit 12

What is it?

The simple explanation is that the Beolit 12, by Bang and Olufsen is a dock for your iDevices. It allows you to play music via Airplay or USB. About the size of an old-fashioned lunchbox, the Beolit 12 delivers incredible sound.

How does it work?

It works via Airplay or USB. Music can be streamed via Airplay from a computer or iDevice or you can plug in your device’s USB cable directly to the Beolit 12. It also sports a rechargeable battery that is good for 8 hours which makes the Beolit 12 highly portable. The Beolit 12 has a substantial heft to it but it is easy to pick up by the leather strap that goes across it diagonally. If you plug in your iDevice it will charge it, even on battery power.

The Macworld review cited difficulties with plugging in the power cable and looping it over a peg in the rear compartment. I did not have any issues with this – perhaps it just needs smaller hands.

Why should I care?

The sound!!! The sound is why you should care. If you are an audiophile you will absolutely love the crystal-clear sound delivered by the Beolit 12. You can turn it all the way up and it does not distort or lose clarity. To quote Macworld: “The Beolit 12 can get hilariously loud – as in, ”I need to go into a second room before I turn the volume all the way up” loud.”

I first read a review for the Beolit 12 in January. I lusted after it until close to my birthday. Deb found one and I got it 2 weeks early. I absolutely adore it.

That’s all great but how much does it cost?

The Beolit 12 is not for the faint of heart. You are looking at $1000 CDN for this fabulous piece of speaker hardware. It is worth every penny. In addition to its fabulous sound it has a great visual aesthetic. Clearly this is something you buy because you have to have a fabulous dock. As music is my sanity it is a great investment in my self-care.

Dispatches from The Swamp – ‘the senior dog’ edition

Things at The Swamp have been quite good lately. I had the week before Easter off and I spent it doing self-care. I listened to music and played computer games for a couple of hours a day. This always makes me very happy. I find when I am listening to music and singing my mind completely empties. I am one of those people whose mind never, ever stops. I am always thinking about something or trying to solve a problem. Even at night, if I wake up I have a hard time turning my mind off again.

All of the dogs are doing well. Tru is an amazing dog. We thought she wouldn’t last the week when she first got here. We are not complacent though. She clearly has something wrong with her – likely some kind of cancer. She doesn’t eat much and she is quite thin. Tru has an odd diet. She loves carbs like chocolate and cake. The only meat she will eat right now is ham. We expect that will end eventually. I think Tru is enjoying her life right now and doesn’t want to go anywhere quite yet.

Ruby[1] is doing fabulously. She is slowly coming out of her shell. She is spending much less time in her crate. She really turned a corner last week when she suddenly became more confident. She is still on the periphery of the dogs as she appears to be scared of the pack. Although, Ruby was able to muscle her way in to the group to get some roast beef. She is sleeping on the bed with us at night. She is certainly becoming much more interactive.

Tuber is such a sweetie!

I really wish more people would consider adopting senior dogs. It is such a rewarding experience to take in a dog who has had a less than stellar life and introduce them to all the pleasures of life. Watching a dog have roast beef for the first time is so rewarding. When you have a dog who has been forced to live outside her/his entire life begin to enjoy the comforts of living indoors is amazing. It takes very little to provide for a senior dog. Yes there may be some ongoing medications and things like that but most vets will not be too intrusive with seniors. When you aim for quality of life, feed good quality food, and provide symptom relief, seniors are an amazing addition to any home. Please consider giving a good home to a senior dog. It will change your life. Check out SAINTS for adoptable seniors. You can also check out Boo who is up for adoption through Bully Buddies.

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[1] AKA: Tuber, Tater Tot

Music from the Swamp – the ‘I like to sing’ edition

Today I thought I would feature some songs that are fabulous for singing along. When I am singing along to a song that hits the right chord for me, I am probably at my most ‘zen.’ Everything feels right and my mind is focused only on the music. The songs change over time so here are some of my current favourites:

Counting Crows – Anna Begins

John Stewart & Stevie Nicks – Gold

This is a very old song. I remember hearing it for the first time when I was about 14 years old. It took years to find it again as all I could remember were the opening lyrics.

Eagles – The Last Resort

Tori Amos – Witness

I couldn’t find the original song. If you are interested it is on her Beekeeper album which is one of my favourites.

The Decemberists – June Hymn

More in the Music from the Swamp Series: The David Francey Edition, The Decemberists Edition, The Warren Zevon Edition, The Playlist Edition

Music from the Swamp – the ‘playlist’ edition

As I may have mentioned a time or two, music is central to my self-care. It is how I escape the stress and anxiety that mark my life. I am really not fit to live with if I do not have time to listen to lots of music in my day. On the days I go to work, I have my 1.5+ hours in my car to listen to music and sing loudly. On the days I am home, I probably spend 3 hours listening to music while I have breakfast and spend time on the computer. In no particular order, are 5 songs that I am really relating to these days.

1. Bruce Springsteen’s ‘Death to my Hometown’ – Bruce may be old but he is still able to capture the pulse of America in his music. He has done this in the past with songs like ‘My Hometown’ and ‘My City of Ruins’ after 9/11. He does not disappoint with his latest song. The premise of the song is that even though war has not come to America, its cities and towns have been decimated. He points out that no dictators have been crowned but that marauders and robber barons are to blame. It is a very powerful song.

2. From the new Sinead O’Connor album there are several songs I really love. The standout right now is the ‘Queen of Denmark.’ I love the anger in this song.

3. Since seeing Spirit of the West at the Commodore on St. Patrick’s day, I have become re-acquainted with their song ‘Unplugged.’ The song is about not wanting to become a burden to one’s spouse. As I get older this song really resonates. This is a live, ‘unplugged’ version:

4. I have featured David Francey before. I just keep finding songs I haven’t heard before that I really like. The latest one is the ‘Long Way Home.’ Canadian music at its finest if you ask me.

5. The Decemberists song ‘The Crane Wife 3’ is an amazing song to sing too. It really satisfies the singing need.

Music from The Swamp – the ‘Decemberists’ edition

I started listening to the Decemberists recently. Although I kept meaning to check them out, I never seemed to get around to it until Wandering Coyote introduced me to them. I have to confess that I don’t like all of their stuff – sometimes I find it is too loud and busy for me. However, there are songs that I absolutely adore. In no particular order here are a few I would recommend checking out:

Followed closely by June Hymn

The Crane Wife 3 is my absolute favourite! I love how it builds.

Foregone is another one of my favourites:

Now I am holding out for the live album due to be released on March 13th!

Dispatches from The Swamp – the ‘Bella’ edition

Bella with her Lion Cut - which she loved!

• We lost Bella this past week. She had a hyper-thyroid and cancer. She had been doing really well – eating, using her litter box, being very affectionate until last Monday when she just stopped everything. We took her to the vet right away. I thought perhaps her thyroid meds were suppressing her thyroid too much but I was wrong. Her abdominal mass was huge and she was done having fun. We let her go right there and then. She was a great cat. It took a great cat to live with up to 11 dogs at a time. She ruled the roost from wherever she chose to hang out. She used to love to whack the dogs as they went by. She was 16 and had been with us for 11 years. We will miss you Bells. You were definitely a one of a kind cat.
• It is no secret that I am not a fan of the robocall. I once tweeted that I would not vote for any of the leadership candidates who robocalled me and got into with a Thomas Mulcair supporter. Ironically, I think that is the one campaign I have not had a robocall from. Now, it would seem, that it is actually the Conservatives who have figured out the best use for robocalls by using them to divert voters who didn’t support them in the last election to phony polling stations. All I can say is that there best be a serious investigation into this scandal. Maybe we should call it ‘robogate’ or ‘callgate’. Here is Rick Mercer’s take on it:

• Now that I have some genetic information from finding my biological parents my doctor has put me on medication for high blood pressure. I had been avoiding this but not anymore.
• This week I am having the last of my dental work done. I will no longer have any amalgam fillings! Plus my teeth have never looked or felt better. I have no pain anywhere. I love my new dentist along with the sedation option for major work. I could not have had my bottom teeth fixed without it. What a difference it makes to your self-esteem when your teeth look good!
• Deb and I are going out with Kasandra for dinner next week. I finally called after waiting about 3 weeks. When she answered the phone she said she had planned to call me that evening. I am still unsure where this will end up. I hope we end up having a great relationship – one that I thought would be there by virtue of the fact that she is my biological mother. I was wrong, apparently. I have not seen Gary since our first meeting and his wife, Martha, keeps putting me off via email. Oh well. I don’t think I have a lot in common with them anyway. I really want to meet the brothers at some point but I am happy to wait.
• I have been feeling pretty good the last couple of weeks. Although I do have an issue when I have to work 5 days in a row. I also seem to really suffer if I don’t have 3 days in a row at home. This week will be short and I am happy for that.
• We started watching Downton Abbey yesterday. It is great! I recommend watching it with the Wikipedia article open so that you can figure out who’s who in the zoo! I have to say that Maggie Smith is one of the best actors I have ever seen. She can convey so much with just a look on her face. Amazing.

Dispatches from The Swamp – the ‘update edition’

• Things have been going relatively well at The Swamp. We had a minor roof leak that was caused by some shingles being too tight up against the chimney. The roofing company I called fixed it for free. They say we need a new roof but I don’t really buy it. Good news is that the leak is fixed.
• We had a huge willow tree that had to come down. It had been dropping huge branches and I was worried it might just come down on our house or across the road. It was a huge liability. The Urban Lumberjack in Maple Ridge did a fabulous job of getting it down. However, one of the rotten branches fell on the hydro and cable lines knocking both of them out. Hydro was back on quickly but they decide to cut the cable line.[1] When I first called Shaw to get it reconnected they were quoting a date of March 2. Anyway, I worked my magic and they were here the next morning at 8am. I am really glad the tree is down now as it is really windy here today.
• Tru has picked up. She is eating more often than not. Her stitches are out so she could finally have a much-needed bath. She absolutely reeked! Now we will know whether her swampy smell is coming from her needing a bath or her horrible teeth. Regardless, she is soaking up the love and companionship at The Swamp. She still likes to greet you by tasting your hand. It is cute.
• We bought a home theatre system last week. We set it up without too much difficulty.[2] The speaker stands took much, much longer to set up! The system is amazing. It has solved the problem of the TV being too loud for Deb as I now have a speaker beside my right ear. Music sounds absolutely fabulous! Diamond Stereo is a fabulous place to get great advice and products.
• We also decided I should get better car stereo speakers.[3] They went in yesterday and they sound so much better. The sound is much richer. I have actually heard things in my music that I did not know where there. Music is so important to my self-care that these investments in my sanity are very important.
• I have been feeling much better the last couple of weeks. I really hope it is a result of some nutrition changes.[4] I have had more energy for work. Getting up and going has not been the burden it is at other times. I do seem to experience a winter improvement in my ulcerative colitis. I am hoping it is not just the winter bump.
• All of the dogs are doing well. Zoe is a bit of a worry at times because she is old but she is fine. Kiefer gets a little sore after going to the park. Piper and Sawyer are such a bonded little duo. They love hanging out together especially in Deb’s truck. We are so lucky to have such a great crew of dogs! The Cat is still doing well. She is as demanding as ever and is showing no signs of being sick. She is still using her litter!

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[1] Hydro says it was for safety reasons, tree guy said it was laziness. I am going with the tree guy.

[2] The only error we made was putting 2 of the speakers on the far right ports as per the diagram. However, our receiver can actually take 6 speakers (plus a sub-woofer) so the first 2 ports on the right are not used if you are setting it up as a 5.1. It took a little thinking to figure it out and we (buy we I mean Angelina) fixed it the next morning.

[3] And by we I actually mean Deb.

[4] I have started drinking smoothies made of yogurt and fruit in the morning. The suggestion came from my friend Lisa.

Dispatches from the Swamp – the ‘saner heads are prevailing’ edition

• It seems like the judge presiding over the City of Vancouver’s application for an injunction to end the Occupy Vancouver protest. Addressing the City’s safety concerns while still maintaining the protestors right to protest.
• We are still under plumbing construction. The driveway is still a mess. We are waiting for the engineer apparently.
• I am in way too much pain to write much more today. Catch you all tomorrow!