Five Weeks

Today marks five weeks since my surgery. Amazing how time flies. All in all, life has been very good. A few rough days with pain and a trip to emergency at the hospital, but really I’m feeling good.

I’ve been up and walking around and slowly but surely building up some strength. Today I surpassed my goal of 10,000 steps. Pretty happy about this.

Today was also the start of the cyclocross clinics. I’ve been leading a small private cyclocross clinic for a few years now. I didn’t want this to end as a result of my recovery, so Marc has taken over for me. Tonight was a great success with everyone learning lots, laughing, and enjoying being out on the ‘cross bike. A big thanks to Marc for taking over and a very huge thank you to the women who have been coming out to these clinics.

I was thinking about the post I wrote one week before my surgery. In that post I listed a bunch of goals that I have for post-surgery. I think that at the five week mark, it’s the perfect time to revisit these:

  1. Out of the hospital in five days: I smashed this and left the hospital after four days. The stay in the hospital was pretty much okay. There were some rough moments, some stressful moments and some downright awful moments but really, it wasn’t so bad. Whenever I end up in the hospital for a while or end up in emergency, I really am so impressed with the nurses – these people are working so hard and it seems like they’re on a flat out run all day.
  2. Be ready for a fun weekend at the cottage on Labour Day: yep, nailed this one. This Labour Day weekend was a big one for me. I’m very happy to say that it was a success. There were no travel or car disasters. No leaks or pouch blow-outs. No stresses over food. My niece and nephew were champs and totally understood that I couldn’t pick them up, play basketball, play pingpong or do any other crazy stuff. It was easy being around my family and just being able to relax and not worry about anything.
  3. Ready to fully take in the Adele concert on September 28 in Montreal. (Fourth row tickets!!!): well good thing I checked the date – the concert is on September 30. All systems are go for this big concert. Air BnB accommodations are booked. I got the okay from my surgeon. I’m stoked. Marc is stoked (or he is pretending to be).

So far so good in the goals department. When I see my surgeon again on September 27 I’ll ask him about getting back on the bike and starting some very light yoga.

Interestingly, I don’t really miss the bike that much yet. I think this is likely because I’m not ready to sit on a bike seat yet.

I’m at the point in my recovery when it’s easy to forget that I underwent a major surgery. The external staples are out. There is essentially no pain. But the internal healing still has a long way to go. This is the biggest challenge – reminding myself that I’m still not recovered yet.

So that’s about it. I’m feeling good. Best I have in a long time. It’s funny to realize that five weeks after major surgery, I’m feeling better than I have in a really long time. I guess I just got used to feeling unwell and being in pain. What a relief it is to no longer be experiencing daily pain.

I can tell you I’ve been doing lots of thinking about 2017 and what I want to achieve. 2017 is shaping up to be a fantastic year. But for now, I’m on the slow and measured approach – this is a race that can only be won with turtle speed.

 

 

Two Weeks In

I’ve been mulling over a blog post for a few days now. Not sure how to start or what to write. So I think I’ll do my best to keep things fairly straight-forward and simple.

Fact: On August 8 I had a total colectomy. This means my colon was completely removed. My appendix was also removed. As well 10 cm of my small bowel was removed. My colon was 65 cm in length.

Fact: I now have a stoma. A stoma is made from the small intestine – it is turned inside out and pulled through a hole in my abdomen. A bunch of tiny stitches (and I’m guessing internal staples) hold it in place. It has the look and feel of the inside of the mouth. It doesn’t hurt to touch it. This is how poop leaves my body.

Fact: I now wear an appliance. The appliance is essentially a bag (but I don’t like calling it a bag…) that covers my stoma. The poop is collected in my appliance. I empty this five or six times a day.

Fact: This is all collectively called an ostomy. There are multiple types: ileostomy, collostomy, and urostomy (and maybe more). I have an ileostomy. This is actually more common than most people realize. People with ulcerative colitis, Crohn’s Disease, colon cancer, colorectal cancer, bladder cancer and more may have an ostomy.

Fact: It’s not horrible. It might sound horrible. I mean who wants to walk around carrying their poop? Oh wait, other people do this but instead it’s in their colon…. If you see me, you likely won’t even notice that I’m wearing an appliance. And if you do, oh well.

Fact: The recovery takes a while. I’m now 15 days post-op and I’m finally starting to feel better. I’m getting out for daily walks. I’m able to eat out at some restaurants. I even went to the mall! It will be a few more weeks before I can think about the bicycle. Frankly, the bicycle is the furthest thing from my mind. I’m content with a couple of 20 minute walks.

Fact: My diet right now is really limited. Only cooked vegetables without any skin, seeds, membranes, peel, etc. Only white bread, white rice, white pasta. Fruit is limited to canned peaches and pears, applesauce, cantaloupe, banana and mango. Protein is super important for the healing process so I’ve added in Kefir, peanut butter, fish, beef, and tofu. I seem to be eating a lot of soda crackers. Arrow root cookies and chocolate pudding are the bomb.

Fact: I’m doing well. I’m okay with all of this. I’ve had a lot of time to think about living with an ileostomy. I’ve talked with a lot of people who have an ileostomy. An ileostomy does not limit me. Once I’ve fully recovered there is no reason that I cannot start riding a lot again.

Fact: I will need a second surgery. I don’t know when this will be. I have an appointment  in February to meet with a surgeon. The second surgery will be to remove the rest of my rectum.

Fact: Marc is superstar. He has been doing everything in the house for the past three weeks. I’m not permitted to lift anything over 5 lbs for eight weeks. This means I can’t really do anything in the house.

Fact: I don’t have to take any more medication for the ulcerative colitis.

Fact: This is not a cure. Even though my colon has been removed – this is where ulcerative colitis strikes, I am not cured. I still have about three inches of my rectum left – the disease could recur there. My body could also outsmart all of the brilliant doctors and surgeons and trigger another auto-immune response in another organ. But I’m not going to worry about this.

Fact: Right now today, I actually feel better than I have in a long time. Yes, I’m fatigued but it is a fatigue I can understand. No, I can’t ride my bike or do yoga or eat the foods I love but I know that soon enough I can do all of this again.

Fact: I’m only looking forward. This is short term hassle for long term life enjoyment.

 

One Week

One more week to go. Wow, time does zip along. I’ve been doing my best to maximize the summer, knowing that August 8 would come quickly.

Now I’ve got one more week before my surgery.

I’m feeling pretty much okay. Some days totally cool and comfy with the changes I’ll be facing. And other days I’m working hard to not freak out. I tell myself this is normal. Of course, I don’t really know since there is no real “preparation” for something like this. The medical details are all taken care of. But the emotional/mental details are really up to me to figure out.

Fortunately I’ve connected with quite a few people who are living very full lives with an ileostomy. These people are my touchstones, reminding me that life will be good. I also remind myself that this surgery is very common (more common than we realize).

Post-surgery, I’m most looking forward to knowing that Marc doesn’t need to live with this disease anymore. It might appear that I’m the only one who has been impacted by ulcerative colitis for the past seven years, but the truth is Marc has been equally hurt by it. Marc has been living with stress, worry and residual fatigue and I’ll be so very happy to see this lifted from his shoulders.

After my surgery on August 8, I’ve got a few goals to motivate me (yes, you know me – always with the goals):

  1. Out of the hospital in five days.
  2. Be ready for a fun weekend at the cottage on Labour Day weekend.
  3. Ready to full take in the Adele concert in Montreal on September 28. (Fourth row tickets!!!)
  4. Get back to real training in October.
  5. Get in a few very easy cyclocross races.
  6. Make sure Marc gets to Belgium for a great season of cyclocross racing.

I think six is enough. I’ve listed them in chronological order but not necessarily in order of importance…

So now I’ve got one week. Three days of work left. One “A” crit to watch. One last meal at the Green Door. One last bike commute to the office. A few fun rides planned. One 12 year wedding anniversary to celebrate. (I think this adds up to a pretty great week.)

 

 

 

Finally Something

Lately I’ve had a lot of blog posts swirling around in my head… but nothing has made it.

As for now. Well, I don’t know what is going to make it.

I can tell you that I’m currently hooked on watching Grey’s Anatomy on Netflix… I’m not sure what happened, but one evening I just found myself immobile and watching Season 1 of Grey’s… Now I’m on Season 4. Yeah, I know. But I can’t help myself. I consider this my chic lit.

I’ve had some pretty stellar bike rides. Discovering lots of new-to-me mountain bike trails. Having fun pushing my limits (in a very careful and gentle way). Enjoying new road riding routes with friends. These rides involved a lot of talking, a lot of pedaling and most importantly lots of good vibes.

Right now I’m focussing on managing my energy levels. You’d think after all of these years I’d have a handle on this. But guess what, I don’t. My goal is to maximize the next two weeks but to not run myself into the ground. I’ve got an important date on August 8.

It’s not often we get the chance to press reset. I plan to take full advantage of it.

Some News

Not a very original title, but it lets me cut-to-the-chase….

I have a date for my surgery. August 8.

When I originally met with a surgeon and her resident in late May, I was told it would be up to an 18-month wait for my first surgery. But, there was a chance I could get in earlier with a different surgeon… So, I told the surgeon that I would be interested in having her recommended surgeon and colleague do my first surgery.

Then one week later I got a call. Then a week later I had an appointment. And now I have a surgery date.

How do I feel? I feel good. I feel ready. I feel confident. I feel slightly nervous. I feel tired. I feel optimistic. I feel thankful.

The people I’ve already told about this surgery have reacted very supportively. A few people have been surprised and shocked that I would be happy about having my large intestine/colon/bowel removed.

I suppose the idea of having an ileostomy is a scary one and not one many people ever want to consider. For me this ileostomy brings with it nothing but relief. Relief that my days will no longer be ruled by toilets and bathrooms. Relief that I can get back to feeling well again. Relief that this takes a lot of uncertainty out of our lives.

I know it’s not going to be easy. But the last seven years haven’t been that easy. I think that with time I’ve simply gotten used to feeling the way I do. It’s not obvious to most people how I’ve been feeling, but ask Marc and he’ll tell you how it really is. Ask anyone with a chronic incurable illness and they’ll tell you that after a while you get really skilled at managing fatigue, masking pain, and simply getting on with living – there really is no other option.

This surgery on August 8 is the first of two surgeries. I don’t know when the second surgery will be. This second surgery requires the skills of one of three specialists in the city – so yes, it could be a very long wait.

I’ll be in the hospital for up to five days after the surgery (assuming everything goes well). Then I’ll be at home for a few more weeks. I hope to be back on my bike as soon as possible. In fact my surgeon said there is no reason why I can’t be doing long rides four weeks post-op.

In the meantime before August 8, my goal is to maximize the rest of June and all of July. I know this time will go by very quickly with the rest of June already packed with the Preston St. crit on Sunday, elite road race nationals weekend, and a Canada Day long weekend visit with my brother and his family.

So yeah, that’s my news. Have questions about all of this? Don’t be shy – fire away.

 

Normal People Stuff

The tricky thing about this is that you just really never know what you’re going to get day-to-day. One day you wake up and you feel pretty good so you go hammer out some kilometres on the bicycle. Next day you’re still feeling pretty good so you continue on with life as you know it – working, volunteering, pedaling, eating, hanging out – you know normal people stuff.

And then that day-to-day changes. Sometimes it creeps up on you slowly – you kind of know it’s coming but you push it back and try to ignore it. If you don’t acknowledge it, maybe it won’t happen, it’ll change it’s mind and go back where it came from. Other times you wake up and it’s there. Full-on there and there is nothing you can do about it.

You suddenly have a new day-to-day.

Last week was a great one. Two very good medical appointments. Finally met with two surgeons, I learned a lot about the surgeries I’ll be getting. I asked a lot of questions. I got a lot of very good answers. We both left feeling very comfortable and confident with the path forward. (No, we didn’t get a surgical date – I’ll know the date six weeks in advance. The wait for this notice could be long, very long. But this is the reality and there is no point in dwelling on it.) Next day I met with my regular gastro doctor for a very good appointment. I mentioned the slight flare I was in but I told him I had it under control. That everything was okay. Yes, I promised to contact him if things changed.

That’s the thing I guess I’ll never truly learn. After all these years, there is no such thing as a slight flare or under control. After all, if I could keep it under control, why would I be writing about the uncertainties in my day-to-day? Yep, silly me.

My new day-to-day involves resting, eating (but not much), pedaling my bike (but not much), and hoping. Hoping this thing doesn’t completely take over. Now is not the time.

Amazing isn’t it how just when you think you have things under control, everything can change on an instant.

I guess this just goes to show that we can never take our day-to-day for granted.

(P.S. stumbled on a hashtag that I really quite like and one day I’ll be using it: #nocolonstillrollin)

 

Hey There

Hey there strangers, it’s been a while. Yes, totally all my fault.

No motivation to write. Nothing to say. Really didn’t feel like spilling my guts on this page. So I just pretended that this place didn’t exist.

Kind of hard to do. This spot would nag at me. With this nag would come guilt, pressure, fear, and fatigue. What could I possibly write today that would be worth reading by anyone else? What could I possibly have to share that anyone else would want to read? Why bother?

Yes, this pretty much sums up where I was for a while.

It got pretty easy for me to forget that no one has it easy. Everyone has struggles. For some reason I thought I was the only one struggling. This rather narcissistic view became my undoing.

Motivation was low. Smiles were not happening. Moping was the theme of the day.

Thing is, I knew while I was in it, that I didn’t need to be. That I didn’t have any reason to be. It just became this place that was kind of comfortable and easy.

I’ve dug myself out. I’m focused on looking at the good stuff. Not thinking about the things that should be coming and aren’t. Instead it’s all about the here and now. Making today a good day so that the next is a good one as well.

Our days don’t always need to be great. This is a lot of pressure. Our days need to be good. The outstanding ones,the ones that often take us by surprise, become the great ones. The “all time greats” don’t come along very often so it’s okay if everyday is not a great day. Having a good day is better than a bad day which is better than no day.

So yeah, I wasn’t around. I am now. Do I still have anything to say? I don’t know. Time will tell. (I can tell you, it feels damn good to be back in this place. I missed it.)