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 …

Dispatches from the Swamp – the ‘rough week’ edition

• I had a horrible week. Last Sunday, I decided to clean the wax out of my ears and succeeded in only blocking the left ear. I have oddly shaped ears with small canals and I have a problem about every 10 years. I kept thinking it would clear. I thought there was just some water in there. We tried everything, warm olive oil, syringing all to no avail. On Wednesday, I had a ulcerative colitis attack and that combined with my ear I was really sick. I ended up going home because I couldn’t stand to be at work. We have some really loud people and all I could hear was them and nothing else. Plus I had a fever and the chills. Thursday, I finally went to a walk-in clinic[1] and he put some noxious smelling stuff in my ear. Then he got this big-ass syringe thing and flushed it out. When it cleared, I felt so much better! Note to self: never, ever fuck with your ears again.
• Tru is really getting close to the end now. She is fading more each day. She is not in distress or pain. We have decided we will take her to the vet on Monday to say goodbye. She has done really well. She lived two months more here just on sheer pleasure. We thought she wasn’t going to make it past the first week but love and good food really helped her rally.
• We also just found out that our favourite vet has left for Edmonton! We had just broken her in and now she is gone!

 

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[1] My doctor hates it when we go to clinics so I may hear about it!

Dispatches from the Swamp – the ‘number 2’ edition

• I have had a difficult week. I was quite fatigued for most of it. I am feeling better though. I am not sure if I was fighting something off or it might have been my ulcerative colitis. Either way, I doubled down on the sleep and got through the week.
• I finished one of my biggest tasks of the year at work this week. It is a combination report back on the previous year and an application for the next year. It is an insane amount of work and it takes a Herculean effort to get it to all come together. I had been working fairly steadily on it since mid-February!
• This week the Clark Government passed back to work legislation on the teachers. In doing so they have further contributed to the erosion of workers’ rights in the province of British Columbia. This government has been doing this kind of thing since they were elected in 2001. They refuse to negotiate instead opting for the bully club. Teachers must have input into their working conditions, which, ultimately, are the learning conditions for children. I sincerely hope we have all had enough of their tactics next year and vote them out!
• Two years in prison is all the time Graham James received for the sexual assaults of Todd Holt and Theoren Fleury. The Toronto Star reports that Holt and Fleury endured ‘hundreds’ of assaults. If we are conservative and say that each man was subjected to 150 assaults each for a total of 300 it means that James is serving 2.43 days for each assault. Nowhere near enough time in my mind. As a survivor of childhood sexual abuse I can tell you that it takes years in therapy to work through it and come out somewhat functional on the other side. James is a predator and should be labeled a dangerous offender so that he never sees the outside again.

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.

New Year’s Resolutions

I have never made New Year’s resolutions. I suspect that I think too much and I know that I am not going to wake up on any January 1 and be a substantially different person who could suddenly achieve everything I could not in the previous year. I mean seriously, I could resolve to lose weight or exercise more but I would fail. Miserably. I suspect most people are unable to meet their resolutions and then just feel miserable about themselves. Here is the thing, we as human beings are incapable of wholesale change. We do not suddenly become different people because of an arbitrary date on a calendar.

A blog posting has been circulating for a bit: 30 things to stop doing to yourself is a great list of things we can stop doing and treat ourselves better. There are some great things there like: “Stop putting your own needs on the back burner.” I am infamous for this. I have am starting to realize that I need to live differently or my body rebels. Self-care for me is imperative or I cannot take care of anyone else. I also need to surround myself with people who care about what I need. I am fortunate to have people in my life who do care about me and show it in myriad ways. Number 17 also has importance for me: “Stop complaining and feeling sorry for yourself.” Living with a chronic illness that can rear its head at inopportune moments and which causes me a lot of pain and fatigue, it is very easy to complain and not push myself. Instead, I try to remember that on most days it does get better once I am up and going. I also need to take some steps to mitigate some of the effects of my ulcerative colitis.[1] What little control I have, I must exercise it.

I have a really bad urge/need to constantly explain myself to others (number 20 on the list). I have reverted to this a lot in the last year given the hell on earth I endured this year. I must stop. It makes me look petty and defensive. It is completely unnecessary as I am very good at my job and I just need to believe it.

Being the perfectionist that I am, I am forever saying things are fine when they are not (number 25 on the list). I used to joke that I had to schedule my breakdown or that there was no time for my crisis. I don’t do that as much anymore. I am trying to learn to value how I feel. I am setting boundaries much more freely now. Now, if I can just extend that to my family of origin.

Where is this all going you ask? Well, given that I don’t believe humans are capable of wholesale change how do we make changes. I believe we do it incrementally. I came across this blog and it makes great sense. Selecting 3 words that will guide your life in the next year is a great way to make some small changes that will eventually add up. Here are the words I have chosen for 2012: Reduce, Listen, Harmony.

What do the words mean to me:

Reduce

I want to reduce all sorts of things. Back to the ulcerative colitis, I want to reduce my dependence on pain medications that cause fatigue. This has been underway for sometime and I have been successful. I am now taking over 60% less pain medication than I did a year ago. I am hoping that further reductions will reduce my fatigue. I want to reduce many things in 2012. I may blog about some other ‘reductions’ as the year goes on.

Listen

I am a horrible listener. I have a habit of thinking that I know what people are going to say and then tuning out. I am also hoping that if I develop a habit of listening more carefully I will be less defensive. I pledge to listen more to others and myself.

Harmony

I am hoping to have more time where I feel good about my world. I want to incorporate much more self-care into my life. I believe that becoming more harmonious with the world around me and not fighting against everything will help me feel better. Part of this for me will be withdrawing from spending too much time on the computer. I have enjoyed getting back in touch with crocheting and the almost meditative state it can put me in. I really must reduce the stress in my life as my body is rebelling.

What about you? Do you make resolutions?

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[1] More on that later.

Bad Day

I am having a bad, bad ulcerative colitis. Today was rife with bowel spasms and cramps. It was like the days I used to have 6 months ago where I ran all day to the bathroom; days that would take me more days to recover. I have not missed this pain. It is unrelenting and I feel like my bowel and intestines have been turned in to hamburger, which is probably an apt comparison.

Other than that my ulcerative colitis has been really good over the last couple of months. I think today was an aberration. At least I hope it was an aberration.

Dispatches from the Swamp – the ‘mish-mash’ edition

• I heard a great podcast the other day called ‘Taking Crazy Back.’ It is by Tod Maffin who has done stints on CBC radio. I highly recommend it! We need to bring awareness to the fact that mental illness is just that an illness. It is not a moral failing.
• I have decided to try and reduce my dose of pain medication over the next couple of weeks. My ulcerative colitis is in a good place right now so it is a good time. I have not had much breakthrough pain for the most part since I was off work in the summer. Reducing my pain medication may help with my fatigue issues, which will make everything so much better. I think this will go well, as I have weaned off before without any issue.
• One more traffic rant! Today when I was driving in some asshole in a pickup truck just blew through a stop sign at one of the 3-way stops. What a jerk!

Phoning it in

I am feeling like crap. I didn’t get enough sleep in spite of going to bed early. I am still recovering from my virus. Oh and if all that weren’t enough my ulcerative colitis has decided to act up. Catch you all tomorrow.