Trick – Not Treat

Candy.jpgHalloween. Tonight marks the 28th anniversary of when I first got sick. 1991. Our daughter had turned 1 year old just 10 days before. I remember that night so well. I was playing in the living room with Stephanie. Things were totally fine. Or so I thought. Then I sat down at the table to join my husband, mother and step-father. I put my feet up on a chair and noticed that my ankles were swollen. Huge. Massive. Fine one minute. Not fine the next.

There started a whole pile of doctors, medications, test, questions, lack of answers. So many doctors, I can’t remember them all. Although a few do stand out. Not in a good way. Our family doctor who attributed my problems to “hysterical mother syndrome”. The three rheumatologists in town who on different occasions forgot appointments, belittled me, didn’t remember why I was visiting or what my current test was supposed to be looking at, checked me into the hospital in a panic and then left town for three days with no word to me about what was going on, prescribed a very serious medication and gave me conflicting instruction on how to take it and then yelled at me because I called several times trying to clarify what I should be doing. Back then, I was timid. And had still to learn how to properly advocate for myself as a patient.

Five years later – 1996 – although I don’t remember the exact date. That’s when the colitis appeared. All sorts of other doctors, medications, tests, questions, lack of answers.

And here we are – 28 years after it all started. Well, after it all appeared. I believe it started long before that. So much has happened in that time. I started this blog a while ago to keep people informed and share my experiences. I haven’t been good at posting regularly. That’s because I’ve been too busy being sick, going to appointments, keeping track of medication and tests. And just trying to get through each day. Sometimes, trying to get through each hour.

I’m back now. I’ll be updating things more regularly, and getting people caught up on what has happened in the last few years. There’s been a lot.

28 years ago. I was hoping it was a trick when the problem first appeared. It certainly has been no treat during that time.

Tears. And Fears.

IMG_2405.JPGI’m sitting on the sofa. Alone. Crying. It’s a grey, overcast, drizzly day – and I’m grey and overcast and drizzly, too. I should be at a funeral today. And here is another day where, even in death, I’ve let down another friend. Again. (Just to be clear, I’m alone because David is at work. When he’s here, he’s very supportive and understanding.)

I could be feeling this way because I’m an empath. I pick up on feelings around me and right now my universe is sad and gloomy and angry and unkind. That’s part of it. Another part of it is that I’m just off another night of not being able to sleep. Some nights, it takes a while to get to sleep. Some nights, it takes time to get back to sleep. Last night, I didn’t get to sleep until after 3. For a variety of reasons. So this morning, I stayed in bed. Slept until noon. Couldn’t have made the drive to Toronto anyway. And part of it is because I hurt. Right now, it seems as if I hurt everywhere. Let me take inventory. Neck. Shoulders. Back. Arm. Jaw. Knees. Throat. Ears. Feet. Gut. Other side of gut. Butt. Teeth. Lungs. Chest. Head. Surely there is some part of me that doesn’t hurt? Doesn’t ache? Isn’t numb? If there is, I don’t notice it because the other hurting aching numb parts are overwhelming.

As I sit here, I think about how I’ve let down so many friends and family members. By not being able to commit to getting together. By not feeling like getting together. By being tired of always answering “how are you” with “not good”. By forgetting birthdays and missing special occasions and just not having the energy to deal with any of it. And that spiralling depression that comes with chronic illness. Not wanting to subject people to that. And some people not wanting to associate with me because of it. I’ve lost friends. I don’t know why, but I suspect it is because of this. Family members shut me out. I don’t know if it is because of this or for other reasons. But whatever reason – it all plays into feelings of loneliness, isolation, sadness, unworthiness. And all of that affects how I am feeling, causes this disease to continue to rear its ugly head and send me down another spiral. It is a vicious circle.

I also have some wonderful friends who get it. Who support me and listen to me and don’t keep score. David is definitely at the top of my list. I’m so blessed that we are partners. In life. In love. In sickness and in health. Definitely for better or for worse. I have other friends who get it, too. My dear friend who send me recipes and doesn’t keep score about how long it is between visits. Who checks what I can eat when we are getting together. And who knows that I do what I can. Another friend, now living in a far-away city who sends me notes and smiles and hope. Who is always upbeat. But understands that I can’t always be. On-line friends who send me encouraging notes and say kind things about me. People in the support groups – for Crohn’s and colitis or Entyvio (one of the medications I take). The dear person who works at Mt. Sinai and reaches out to help me find a better doctor and more answers. The dear person on the other end of the phone or email from the drug company who listens to my frustrations and offers suggestions. Bless all of you. And thank you. This is what keeps me going.

As I sit here, I reflect (once again) on all the time that I have wasted during my life. And the energy that I have wasted. I expended so much energy on my jobs when I was working that I wore myself out. And it feels as if I used up my allotment and have nothing left. Getting dressed is a chore some days. (Yeah – I’m still I my pajamas right now and it is 3:45.) When we had Hazel, taking her for her walks took all my energy on some days. Doing dishes or cleaning or cooking or … can take all my energy. Again, David is wonderful and does so much, but that is a struggle as well. Because I need to feel as if I am contributing and helping and part of the household. I have to constantly remind myself to do what I can and let the other stuff go. But there is so much that I want to do. And so much that I’m afraid to even try.

I’ve started crafting and want to try selling some things. But some days, I can’t even come up with the energy to make anything. We have a craft show that we signed up for next month and I have to get stuff done for it. And I’m afraid to be there – is there a bathroom nearby. What if I’m too ill to work there that day – how is that fair to David?

I want to work. I should work. Since we aren’t on our sailing adventure, we need to be bringing in money. But what can I do? I can’t work retail because that doesn’t allow me to run to a bathroom whenever I need it. I can’t work in an office environment like I had before I “retired” because the stress would totally do me in. I’m not good at working at home on my own. That’s been proven over and over. So I don’t even know what to do. And I don’t have the energy to figure it out or make it happen.

I want to travel. But even a drive to the grocery store fills me with dread some days because I don’t know if I can make it. Where is the bathroom? Is it going to be in use? Will I be able to wait until it is available? I have days where I can’t even make it from our living room to the bathroom in time. At least that’s in private where I can shower and change my clothes. Public is a whole other stress.

I used to consider myself to be a positive person. Able to spread sunshine and see the silver lining and find the gratitude in any situation. I’ve lost that person. And it feels as if I’ve lost that ability. And that makes me sad. So I cry for that. And fear for that, too.

It is a tough day today. I haven’t eaten yet. Because some days, I’m afraid to eat. I know some foods that set things off and make things worse. Sometimes I’m determined enough and strong enough to avoid those foods. Other days, I just don’t care anymore. I don’t have the strength or the willpower to stick with it. And some days, I just can’t be bothered trying to figure it out. It’s sad and scary when food that is supposed to sustain us and give us life can cause so many problems and even kill you. Very sad. Very scary.

So today, I sit on the sofa. And cry. Say good-bye to my friend in my own way – the way that I can handle right now. Thank her for her friendship. Apologize for not being a better friend. And determine to try again tomorrow.



An Apple a Day…

Apple …hasn’t been keeping the doctor away. But I have learned that what I eat greatly affects how I feel. There will be a lot of posts about food because of what I’ve learned over the years. Some people with colitis say that food doesn’t affect them at all. I’ve learned that I’m not one of those people.

What else have I learned? Basically, I’ve learned what I should and should not eat. Note that this is different than what I can and cannot eat. I can eat whatever I want; however, I shouldn’t eat whatever I want. Through trial and error, some input from a naturopath years ago, and some advice from a friend who pointed me towards some very helpful cookbooks, I’ve developed a list of what works and what doesn’t work for keeping me feeling good. And feeling well.

I’ve learned that potatoes aren’t good. I knew about nightshades not being good for arthritis. I knew that potatoes were a nightshade. I just never made the effort to get off them. I learned a few years ago that if I eat even a couple of bites of potatoes, I won’t be able to get up from the table without great discomfort in my knees. And any inflammation in the body, wherever it is located, can set off my colitis. So basically, I avoid potatoes. Except for stealing one of my husband’s fries when they look particularly good or when I just can’t resist a potato chip. Which is rarely. I don’t usually miss potatoes but then again, I never was a huge potato lover before I gave them up. Well, except for potato chips. That was hard. Really hard. (Cue sympathetic violins.)

I learned that I react the same way with peanuts as I do with potatoes. Yup – I avoid them as well. I wasn’t much of a peanut eater before, either. I don’t miss peanut butter that much but I DO miss Oh Henry chocolate bars. And Snickers. And Reese’s Peanut Butter Cups. And now I have a craving. Although I won’t indulge. It isn’t worth it.

I miss dairy. Really miss it. And sometimes I have it even when I know that I shouldn’t. Dairy affects my gut a bit, and it really affects my respiratory system. When I indulge, I struggle with my breathing. For days. Laboured and painful and tight. Which means that my lungs are full of inflammation. And inflammation anywhere in my body can set off my colitis. (Oh wait, did I already mention that?) When I do indulge, I know that I’ll be suffering because of it. That means that I make sure it is worth the consequences. Really good cheese. None of the mass-produced cheddars and mozzarellas. Definitely no cheese slices. None of the crappy ice cream. All high quality, more expensive stuff for me when I have it. Häagen-Dazs and Ben and Jerry’s it is. On the rare occasion. And béarnase sauce. Oh man – that’s one of my favourites. All reserved for a special treat on a long weekend, or a special celebration like a birthday or an anniversary. Sigh.

Wheat. I miss it as well. Not as much as dairy except for some things. Wheat, I have learned this year, is one of the worst things for me. I suffer for days afterwards. It really seems to set off my gut problems. Celiac disease runs in my mother’s family. I know of aunts, cousins, and nieces with problems. My mother had a sensitivity but never had a confirmed diagnosis. I do know that she felt better when she didn’t eat it. So I work hard at staying away from wheat. No bread. No pancakes. No bagels or croissants or Shredded Wheat or cookies or cakes. Another sigh.

Corn. And salads. Let’s just say that when what you eat comes out looking the same as it went in, it is a sign that your body can’t process it, so you shouldn’t have it. I shouldn’t have it.

Sugar. I have cravings for sweets. I’ve worked hard in the last couple of months to reduce the sugar that I eat. Honey is fine. Processed sugar is not. The easy part of that is that most items that I used to indulge in that contain sugar also contain wheat or dairy, so giving up those also meant that I was giving up sugar. There is so much hidden sugar in things as well. I haven’t totally given it up because I still eat pickles and mustard and other condiments that do contain sugar. For the most part, I don’t eat it. Let’s say it’s 90% gone.

While an apple a day isn’t keeping the doctor away, avoiding these foods is keeping the colitis flare at bay. While the flare isn’t totally gone, I do know that the 6 weeks in July and August this year where I was very strict and ate very clean, I felt a ton better. My gut. And my arthritis. Big improvement in how I was feeling. So why oh why oh why did I quit being so careful in September? And October? More about that in future posts. And time to get back on track.

Next time, I’ll tell you about what I should eat and what worked really well for me in the summer when I was being so careful. And by then, I plan to report that I’m back to being diligent about what I put in my body. Stay tuned.




So…What’s Been Going On?

Instead of going in chronological order of my whole history, I’m going to jump to present day happenings. This is what prompted me to create this blog. Many people wanting to know what is happening and many times where I’ve repeated the same information. Don’t get me wrong – I’m happy to answer the questions and I really appreciate the concern. Many of you know that I prefer the face-to-face one-on-one contact, and that I don’t shy away from talking about what’s been going on.

lupine-photo.jpgAbout three years ago or so, David and I decided to take early retirement. This was based on that never-answered question “what if”. What if my health deteriorates? What if one of us is too sick to enjoy retirement? What if things turn out the same as it did for his father (who developed ALS and never made it to his retirement and all the travel plans he had for that period of his life)? So we decided that we’d retire in our late 50s, travel, sail, see the world. And if we needed to, we’d work part time to fill the kitty or get jobs after our travels if we decided that we didn’t want to sail any more. We made a plan. We set a date.

For me, that original notice date was March 31, 2016. The retirement date was set for June 30, 2016. I wanted to give lots of advanced warning. I actually gave my notice about a week earlier than planned because I wanted to time things properly for my manager. We were in the midst of goal setting for the upcoming year and I didn’t think it was fair to set all these goals and then a week later to come back and say that I wasn’t going to be around to do those things.

About a week after giving my notice, the pain hit. Not the pain of quitting. Not the pain of planning for my departure. It was an excruciating pain in my left abdomen, just below my rib cage. So bad that I could barely stand straight. So bad that I could barely sleep. So bad that I could barely focus at work. Bad enough to get me to go to my family doctor. And that HAS to be bad because I don’t like dealing with him. (Stay tuned for more about that.)

Long story short, for the sake of this post and the readers, I ended up going back to my gastroenterologist for a colonoscopy. (Let’s call him Dr. M) Well, a partial one that is, because there was scar tissue in the area where I was feeling pain, and he couldn’t scope any further. I was sent for a CT scan and was told that it showed some inflammation in the rest of the colon. Medication was prescribed. Medication was taken. A follow up was done in March. There were appointments in between those times, but not a lot happened during those visits. (More later on that, too.) Another non-completed colonoscopy and another CT scan later, I was told that I needed to have the section of the colon that was badly affected by scar tissue removed. That turned into a statement that “the whole colon has to come out and it has to come out as quickly as possible”. As you may imagine, that increased my blood pressure, my respiratory rate and my panic. I asked for a second opinion and after much insisting, Dr. M finally agreed to set one up.

I had a third colonoscopy at Mount Sinai Hospital in Toronto on September 1. The good news is that this doctor (Dr. S) was able to complete that colonoscopy. I’m hoping that the dietary changes I made in the last six months factored into that success. (Guess what – there will be more about that in separate posts. So many changes and so much difference in how I feel, I need to dedicate a few posts to what I’ve been doing.) I also know that they use smaller scopes there so that would have also contributed to that doctor being able to complete the test.

And here’s the kicker. In the midst of what feels like a million kickers over the last 16 months. I don’t know the results. I have to wait until the end of November to talk to the doctor to discuss what they found. THREE MONTHS. That’s ridiculous. Absolutely stupid to expect a patient to wait that long to discuss results. When I questioned Dr. S’s receptionist about this, she told me that if there was bad news, they would phone. So not only do I have to wait a stupid length of time to discuss next steps, their policy is that patients receive bad news by phone. OVER THE PHONE. Not in a face-to-face meeting where the person can ask questions, get answers, have support. But in a way where it is more convenient for the doctor to avoid dealing with the warm body and the hot emotions. Coward.

I haven’t received a phone call. I’m looking on that as good news, but it still leaves me hanging, not being able to ask the many questions that I have. Not being able to plan our future. Not being able to know the prognosis. Just hanging on, waiting, wondering, worrying.

And while that happens (or doesn’t as the case may be), we’ve postponed our retirement plans. Twice. No trip down to The Bahamas on our sailboat. No sailing off into the sunset. David has returned to work, although it is at a different company and it is part time.

That’s a quick summary of the last 16 months. The “run into you at the grocery story” version. There will be more details revealed in other posts. Those will be the “let’s get together for a tea and a visit” posts. I hope you’ll join me. The tea’s on me.


What is Colitis?

NOTL Yellow FlowersSimply put, colitis is inflammation of the colon. “Itis” refers to inflammation – think about arthritis, gingivitis, appendicitis. All are inflammation of something. “Colon” is our large intestine, the final section of our digestive system. It removes salt, water and some nutrients from our food. The average size is 166 cm for males, 155 cm for females.* (That’s 65 / 61 inches.) Over 5 feet. That’s a lot of colon!

Colitis is one of several diseases related to the digestive system. And there are different types of colitis, too. I have ulcerative colitis. Instead of me trying to explain them all, I’m going to provide a link to a video that I think does a great job with the explanation.

can talk about what colitis is not.

It is not something I’ve eaten. For some people, it can be exacerbated by certain foods, but it is not caused by food.

It is not contagious. It can run in families but you can’t catch it from me. I promise.

It cannot be cured. Some people find that some practices help, such as removing certain foods from one’s diet, adding other foods, meditation and stress reduction, medication.

Some people need surgery. Others do not.

It comes and it goes. I can have good days. I have have bad days. Some people have really bad days. Unable to work or go for a walk or go on vacation. Man – I really feel for those people. Overall, I’ve been very fortunate with my disease. More about that in other posts.

It is not just about poop. Yes, diarrhea is a symptom. But there is more to it that just talking about poop. (I had posted a question on a colitis support group on FB about the name of this blog. Of course, all sorts of people wanted it to mention poop in the name. That’s not what this blog is focused on, so I rejected those suggestions.)

It is nothing to be embarrassed about. Most people cringe and grimace when gut and poop problems are mentioned. They aren’t willing to talk about problems they may be having. They ignore problems. They pretend it isn’t happening. They assume it is going to go away. Wrong. Wrong. Wrong.


I’ve learned a lot about colitis and IBD and IBS and Crohn’s disease just reading things for this blog. Far more than my doctors have taught me. I wonder if that is because more information is available now than 20 years ago or if people are more open about discussing it. I don’t know. What I DO know is that it is important to be educated and aware. I’m trying to do my part.


* That’s according to Wikipedia. Because the medical websites I checked gave all sorts of information about diseases of the colon but no information about the physical properties of it. Go figure.

Where it Began

DSCN1644October 31, 1991. That date will be forever burned into my memory. Halloween night. Our daughter had turned one only a week and a half earlier. My mother and step-father were visiting. They sat in the kitchen with my husband while my daughter and I danced in the living room. We were laughing, having fun, care-free. When we returned to the kitchen, I put my feet up on another chair and noticed that my ankles were swollen. Not a little bit, like end-of-the-day, on-your-feet-too-long swollen, but HUGE. Bigger than my knees. Something-isn’t-right swollen.

The doctors had no idea what was wrong, other than to say it was some type of arthritis. No idea what type (there are over 100 kinds, I learned). No idea what caused it. Although I learned, years later after switching to a different family doctor, that mine at the time labelled it as “hysterical mother syndrome”. Let’s just say it’s a good thing that I didn’t know about that diagnosis at the time, or I would have shown him just what hysterical looked like.

At that time, Kitchener-Waterloo had three rheumatologists. Over the first few years, I saw all three. Because I rejected each of them for various reasons. Right now, it is a bit of a blur and I’ve forgotten details. Those may come back to me as I document this history.

Rheumatologist #1 — “Go to the hospital. Go there immediately. Get admitted and I will talk to you there.” Of course, my heart was racing and I was terrified. I was admitted. He came to see me for a few minutes and told me he’d talk to me later. That must have been a Thursday. On the Friday – nothing. Medication from the nurses. That was about it. Then on Friday evening, all the lights in the ward went out and I was left alone. Totally alone. All the other patients had been sent home for the weekend. All the nursing staff went home. No one had said anything to me. A couple of hours later, a nurse from the next ward over came to give me supper. And explained to me that they’d be taking care of me over the weekend. And questioned why I was there and hadn’t been sent home by the others. And told me that my rheumatologist was out of town and couldn’t be contacted. He didn’t even have the courtesy to tell me that.

Enter Rheumatologist #2 — Filling in for #1 that weekend. The nurse called him and asked why I wasn’t allowed to go home. I wasn’t that ill and could be treated as an out-patient. He agreed. Without seeing me. Said that he would call in a prescription and gave her the directions over the phone, which she reviewed with me. I’m very careful with making sure I understand what has been prescribed, dosages, side effects. I knew that the drug I was being given (Prednisone) had some potentially serious side effects and needed to be taken according to directions. When I got the the pharmacy, the directions were different than what the nurse had told me. I called the doctor. He didn’t return my call. I called again. He didn’t return my call. I called a third time. He called back and raged at me because this hardly constituted an emergency. Yup – guessing at how much medication to take was just a normal, everyday occurrence to him, apparently. Our relationship didn’t last long.

Let’s try Rheumatologist #3 — Things started out well. He seemed to be conscientious. He talked to me. He gave me information. By this time, my knees had also swollen to far bigger than knees should be. He wanted to take a sample of the fluid to help identify what was going on. Sounded like a good idea. Appointment at the hospital booked and confirmed. Patient shows up at scheduled date and time. Doctor wasn’t anywhere to be found. Administrators of the area apologize and try to track him down. An hour and a half later they found him. Not at the hospital at all. He’d forgotten about my appointment and was off doing something else. No word of apology. No indication that he had inconvenienced me. No patience for being treated like this – patients deserve respect as well. Appointment #2 a couple of weeks later. He did arrive for this one. Had no idea why I was there or what he was supposed to be doing or that he and I had spoken at his office about my history. End of relationship with Rheumatologist #3. When I went back to my family doctor, his question was “What did you do this time to upset another doctor?” End of relationship with my family doctor.

That’s how it started and some of the initial history. Rheumatologist #4 entered the picture but I’ll cover that in another post.

Through all of this, I did learn some valuable lessons.

  1. Document your medical history. I didn’t do this at the beginning. Because when something happens, we think it is going to be taken care of, be gone and will never return. One never knows what can happen and what can manifest. Keep a journal.
  2. Expect to be treated with respect and concern. In fact, demand it. More about this later as well. Because, no – this isn’t the end of that lack of respect and concern from doctors.
  3. Be involved in your care and treatment. Ask questions. Get answers. If you don’t understand, keep asking questions and getting answers. If that doesn’t happen, don’t be afraid to look for another doctor.

I didn’t learn these lessons until much later and share them now in the hopes that others will learn from my oversights.