I’m sick again.
It started last December with some bleeding. This bleeding was off-and-on – sometimes extremely painful and other times it wasn’t a big deal. Yes, I saw my doctor. I have medication. It was helping – sometimes.
Over the last couple of months, the bleeding has gotten progressively worse. I’ve got new medication. I’ve also got a sort-of-diagnosis – I have to wait until December 18 for a couple of scopes to confirm this diagnosis. The sort of diagnosis is for a disease called: diversion colitis.
Turns out the rectum needs triglycerides to keep it healthy. My rectum is not connected to anything (the colon is removed and there are a bunch of staples keeping it closed off). Normally the rectum gets these triglycerides from food we eat – the colon does it’s job and delivers these to the rectum.
Without a colon, this is not happening for me. The result is the growth of bacteria which causes bleeding ulcers… So yes, kind of back at square one. Once I have the scopes in December, hopefully my doctor will be able to make a diagnosis – and then I’ll likely get some new medication that deliver triglycerides to my rectum.
The real solution is to have my rectum removed – but I’m on a waiting list for this surgery.
This is all the good news. This is the good part of being sick. Since Sunday, things have gotten worse. Now I have new symptoms.
Extreme joint pain. It started with my right foot. For a couple of nights in a row, my foot would ache through-out the night to the point where I could barely put weight on it. Then on Wednesday, I woke up with a sore left knee. During the same day, my right knee became extremely painful. Walking was not easy. Then late in the afternoon, the pain hit my right wrist. My wrist was so sore that I had to use my left hand to eat.
Wednesday night saw me sitting in a chair crying. I could barely walk. I couldn’t use my right hand. I was in extreme pain.
Today, things aren’t much better. The pain in my right wrist is mostly gone. But my knees are still ridiculously sore. I did have some reprieve from the left knee pain on Thursday but it came back overnight. And now I have a new pain on the outside of my right foot.
None of this has to do with what I’m eating or doing. It’s my body. It’s called auto-immune disease. It’s called ulcerative colitis. This is what can happen. A lot of people with ulcerative colitis also have arthritis. I don’t think this is arthritis because there is no swelling or redness – there is another condition called arthralgia.
I called my doctor on Thursday morning. I didn’t hear back and his office is closed today. So, I’ll wait until Monday.
In the meantime, I’m taking Advil and using heating pads to help alleviate the pain.
I’m not telling you this because I want pity or for people to feel sorry for me. I’m telling you this because this the reality of living with an auto-immune disease like ulcerative colitis. I look great from the outside. I’m super fit right now. But my body is broken.
It is Crohn’s and Colitis Awareness Month and I think it’s important for people to really be aware of what one of these diseases can look like. It looks like me.
It’s funny how this body that let me race last weekend at the Canadian Cyclocross Championships has now crumpled. If I could fix this I would. But this is beyond my control.
I thought that after eight years of this, I’d be used to it. But I’m not. I kind of thought I’d cleared a corner and was on my way to a life that didn’t involve thinking of disease everyday.
I guess this is the way it is.
It might sound strange to read this: the bleeding and the pain and cramps that come with it – I can handle this. But the joint pain is on another level. This joint pain means I can’t use my body. In the past, I could always (most times) get out for a ride and feel better. Not now.
So, yeah, I’m sick again. This is life with ulcerative colitis.
So sorry to hear. The asymetric joint issues are common with AI based arthritis. I saw issues with right knee, left thumb and left foot. I also had spinal issues along with the onset of some psoriasis and thus the Rheumatologist diagnosis was Psoriatic Arthritis. This was a decade ago and I’ve been on Humira since, which has kept it in check. Auto Immune disease is silent anf mostly invisible to the outside world. You look healthy for the most part, though I personally lost 20# and aged in appearance noticeably during the onset. I hate the drugs and the dependency and have gone off them multiple times over the years for as much as 8 months, only to return to them when symptoms recur. I guess that my point here is that you are not alone in this new battle and that there are tools available to help fight. Talk to a good Rheumatologist. Oh, stress as well as physical trauma can trigger flares in over active AI system’s attack of healthy systems. Last weekend was probably pretty stressful physically as well as mentally. Good luck and let me know if I can help in any way.
Sorry to hear about worsening Conditions Vicki. I have read about the joint pain but luckily I haven’t had any of those symptoms yet. My Sis had her rectum removed (She has Chron’s) as she had loads of issues, she is a lot better now .
Hope you overcome these issues quickly and get back Crossing.
Your story has helped me cope with my condition.
Thanks so much Glyn. I owe you an email – sorry I haven’t responded yet. Believe me- you’re a huge inspiration for me. Seeing your photos on Instagram and reading of your success this season, while battling UC is huge for me. Keep on pedaling and living life to the max.