Living with Chronic Disease

I have been living with ulcerative colitis* since June 2005. In that time, I have been hospitalized twice, had 2 blood transfusions, had a barium enema**, had 3 colonoscopies, had a gastroscopy, had too many IVs to count, and had blood tests in the hundreds. I have taken more medication for colitis and its associated secondary illnesses than I ever thought one human being could take. I have lived in chronic pain for most of the last 5 years.

Ulcerative colitis is an inflammatory bowel disease. It is confined to the colon where it causes ulcers that can bleed. Severe pain, cramping, diarrhea and blood loss are some of the common symptoms of ulcerative colitis. There are also symptoms that occur outside of the colon. These symptoms can include joint pain, eczema, eye problems, thrush, canker sores, yeast infections and other fungus, and skin eruptions (like boils). In reviewing the list of symptoms outside the colon, I have had most of them at various times.

For the most part, I persevere through all of this. I have developed an anxiety disorder living in pain and the stress of constantly locating bathrooms. I never know what the day will hold for my colon. In the early years, I would make 20+ trips to the bathroom. It was exhausting.

Fatigue is perhaps the worst part of this disease for me. I am so tired all the time. It is a different kind of exhaustion on a level I have never felt in my life until ulcerative colitis. I need to sleep 12 hours per night to function at all.

I cope ok. I am stubborn and I refuse to give in. However, there are days when I just lose it. Today was one of those days. My hemoglobin is low due to bleeding and Imuran.***  I am tired. I have had a difficult week. I have passed a lot of mucous and blood this week. Plus I have a very painful boil on my leg and canker sores in my mouth. It seems that the more symptoms I have, the less well I handle it. Add stress from life and I want a nice quiet place where I can cry. Today was one of those days. I don’t have a lot of those days. I probably have a right to have more of these days than I do.

*I will write about food and ulcerative colitis for Wandering Coyote at some point in NaBloPoMo.

**The barium enema, was hands down, the worst test I have ever had. It as humiliating, painful and did I mention humiliating? Plus you don’t get that wonderful conscious sedation so that at least you can forget about it the next day.

**Imuran is an immune suppressant medication that I take for ulcerative colitis. I also take mezavant and pariet.

Some of my Favourite Things

I often have little blog themes that trip through my head. Often they are not enough to write a whole blog about but, nonetheless, they are important to me. I have no idea when this blog will actually be published. Probably once I think I have enough things. I am starting this on May 8, 2010.

  • I love going to bed at night. In fact I think it is the thing I most enjoy in my day. We keep our bedroom very cold – in the winter we have an open door, windows and a ceiling fan. In the summer we have an air conditioner. It feels so great to get into the cold sheets. Usually Deb has gone up first and she will turn on my heating pad or my electric blanket so I get the lovely contrast of hot and cold. Some nights we cuddle and most nights we talk about the adventures of our day or work out something that has been niggling at us. We have Piper and Zoe who both like to cuddle with us, usually pressed up hard against one of us.
  • Deb and I spent the evening together watching old Law and Order SVU. We sat with the dogs, we ordered food in for dinner and enjoyed each other’s company. We were supposed to go out to an event but I am still not recovered from the colonoscopy on the May 10. I am taking iron to try to get my energy up plus I am on higher thyroid medication so hopefully that will kick in soon. Low thyroid causes fatigue. We don’t often get a chance to be together and watch TV.
  • I love driving home listening to music. Anyone who has read my blog for any length of time knows that music is one of my most important self-care techniques. I have a great place list going right now. I have music from the 1970s (Styx), the 1980s (Pet Shop Boys), 1990s (Richard Shindell) and the 2000s (too many to mention but Timbaland stands out). Music has been central to my mental health since I got my first record player. Actually, it goes back even further to listening to Jim Croce on my mother’s 8-track tapes. I can remember waiting anxiously for them to play Seasons in Sun by Terry Jacks. The most important music I can remember listening to the most was Fleetwood Mac, Queen and Supertramp. I am not sure I would have gotten through adolescence without them.
  • I love to watch our dogs play. Right now Zoe and Sawyer are the main attraction. They play for long periods of time. They don’t bark or growl they just play.


Describes how I feel as a result of my colonoscopy. I feel violated and traumatized from the procedure. Colonoscopies are incredibly intrusive. I am not going to describe it you can check it out here. To go through this without enough sedation was outrageous. I am going to complain but right now I am busy dealing with the after effects of a traumatic experience.

I am on the verge of tears about it. I am dealing with physical pain. Every muscle hurts and aches. I am exhausted – even more so than normal. I am having a great deal of difficulty concentrating.

Self-care is the goal right now. I am going to sleep and relax as much as I need to over the weekend. I am hoping to be back to normal (for me) by Tuesday when I will be attending a major conference. Wish me luck.

My Gastroscopy and Colonoscopy

I have had 3 colonoscopies so I was not in the least bit worried. I was far more concerned about the gastroscopy. All went well to begin with. Deb and I arrived at the hospital without any problems, we even got a great parking spot. I registered and we went to the area of the hospital where these procedures are done. I have to say, the lay out at the Royal Columbian is great. Everything is on the first floor and not at all hard to find. Everything was very efficient.

It started with the IV. They actually had the ativan on hand to like I had arranged. The IV nurse was great. She was an awesome combination of kind and understanding but firm in knowing what she was doing. I suggested that she use warm heat on my left arm where I often see veins in the shower. She told me she would only try twice and if that didn’t work they would do something else. I relaxed and let her do her thing. She got it in, in the area I said might work and she did it the first try.

Now if only the tests had gone so well. They gave me the conscious sedation, he sprayed my throat with numbing stuff that tasted awful. Then they put a ring in between your teeth through which they passed the camera. I can remember him finding a pill and asking what it was before he realized. The next thing I remember is the camera coming out. It went well.

Next was the colonoscopy. From the beginning it was bad. When the doctor shoved the camera in I screeched because it hurt so badly. He commented that it must have been because of all the ‘poops yesterday.’ What he didn’t know was that those of us who have done multiple preps know a trick to keep from getting too irritated.* As the test proceeded I was feeling more and more pain. I kept asking for more medication and they wouldn’t give me anymore. The doctor commented that perhaps it wasn’t working because I took morphine for pain. They didn’t stop and he kept going, all the while complaining about how hard I was to scope. At times he seemed to get ‘lost’ in my bowel. At one point he asked the nurse if that was the cecum. I was also able to hear that I still have colitis, some active and some healed.

Now, what is really disturbing about this colonoscopy is that I should not remember anything. The idea of the conscious sedation is that while you are not completely out you are also not aware of what is going on. I went through this entire procedure. I felt all of it, I asked for more drugs and they ignored me. The doctor who did my scope is not my regular GI doc, she was there but they are so overrun I was passed to him. I am not impressed with this situation and I will be complaining loudly. Unfortunately, I won’t get the results until the end of June.

*If you ever have to have a colonoscopy I will explain it to you. It is way TMI even for my blog.

Prep Day

I have my colonoscopy and gastroscopy tomorrow at 12:30. I am doing the prep today which, borders on hell once it gets started. I will spare you all the details but needless to say it will be my own tiny slice of hell. Thankfully I have lots of drugs to make it through the day. Deb is going to go and get me a 7-up and lemon aid slurpee if she can find them. My life sucks today.

I will spare you all the gory details. Suffice it to say I will have more than enough time to read the new Mac magazine that arrived on Friday. Plus I have 3 back issues of the Walrus to read to. I should be set. I will then whine, whinge and generally feel sorry for myself. I will categorize this behaviour as self-care as I sit with a heating pad and try to relax.

I did remember to call my Mother for Mother’s day. She has been a bit nicer since she got sick and quit smoking. I am not expecting this to hold as I know her very well and leopards don’t change their spots. Apparently my sister is also going to quit smoking. I hope this all goes ok or Deb and I will be in the middle of a conflict that would scare suicide bombers. Seriously folks, this is not an exaggeration. Those 2 can fight like no other 2 people I know. If you don’t keep your head down they lock on to you and there is no getting away from them.

Dispatches from the Swamp – the I don’t know and the things that make it better edition

  • Life is pretty much up in the air as far as my health right now. I don’t know if I Crohn’s disease or ulcerative colitis. Well actually I know I have ulcerative colitis the only question with that is if it is worse. I don’t think it is worse even though my symptoms are bad right now. It is because I have been off of imuran since November.
  • I am booked for a colonoscopy and a gastroscopy in about 10 days. I am not really worried about the tests it is the prep that sucks. Plus because of all the activity of the prep I will suffer for days. Not happy.
  • I don’t know what they are going to do. I do not ever want to take prednisone again. The drug makes me hot and miserable plus I cry. If they put me back on imuran it will take 4-6 months to kick in which means well, more of the same. Either way you cut it, it sucks.
  • If I have Crohn’s I don’t know what the hell they are going to do. Which is going to suck too. I am sure it will not be pretty whatever it is. Probably more of the same shit.
  • Regardless of what it is I doubt that I will be feeling better any time soon which, sucks.
  • I have a wonderful partner who I adore. She makes living with this horrible disease(s) easier. Having a partner who understands and who is sympathetic makes a huge difference.
  • I have dogs. Right now our house is a piece of canine heaven. Everyone is getting along and they are all sweet, sweet, sweet. Coming home to excited faces and wagging tails always makes me smile.
  • I have a great job. I love my job. I love the people I work with.

Good Times

Well I saw my GI doctor yesterday and as of today I have been booked for a double scoping procedure. On May 4, I will be treated to a colonoscopy (#3 for me) and a gastrospy*. Basically they are going to scope both ends.

The fact that they are doing it on May 4th indicates that it is pretty serious. Crap. It also shows that our medical system works well. If you have an acute, urgent need you get the tests or procedures you need. I am happy to be a Canadian. I am not so happy to have ulcerative colitis or perhaps Crohn’s disease.

Hopefully I will get some answers after these scopes. Although I am not so sure because really there is not much more that can be done except to go on Remicade and/or have my colon removed. If it is Crohn’s then there may be different treatment models. Wish me luck!

*I think?