One day I was scrolling through my Facebook feed and I saw posted on Fight CRC, which is short for Fight Colorectal Cancer and is an organization that does the Undy Run among other things, an article titled "What is LARS" and I thought to myself, um... what is LARS?
Let me back up
For the last three years, since my resection surgery in 2015, I have talked to probably half of a dozen doctors about my bathroom problems. Doctors at the cancer center, my surgeon who performed my surgeries, a naturopath, my primary care physician, two gastro docs and on and on. I have done COUNTLESS online searches trying to figure out what my problem is. IBS? A gluten sensitivity? A lactose issue? Candida overgrowth? SIBO? But none of these searches lead to an answer. Sure I had little bits and pieces of each and every one of those possibilities but none of them really explained why I was still spending hours in the bathroom and sometimes doubled over with stomach pain. I had even asked my gastro doc a year ago, with tears in my eyes "It's been two years, is this the best it is going to get? Should I just be happy that I'm alive even though my quality of life is less than ideal?" I think he told me to try probiotics (which I was already on) and kind of shrugged his shoulders. He didn't know how to help me. No one did.
So I felt like, gosh, if this cancer gastro doctor doesn't even know what is wrong with me, who will? I felt really alone. And like although I won the "You get to live your life" lotto I felt like I lost the "but not with a normal functioning body" caveat. I was going to have good days and bad days and there wasn't much more I could do about it. There are things that are 100% not possible anymore. And that's just the way it's going to be and that's all there is to it. I had tried all sorts of things as I was guessing at what could help but they all just seemed to make my problems worse, not better.
Fast forward to January 16, 2018. And the article.
As I read the article, I started to freak out. I mean, seriously freak out! I had EVERY SINGLE SYMPTOM it mentioned.
The symptoms of LARS are different for everyone, but could include:
- Frequency or urgency of stools, largely due to the fact you have less space to store stool after removing part of the rectum
- Clustering of stools (many bowel movements during a few hours)
- Fecal incontinence (lack of control over bowel movements)
- Constipation for more than a few days, followed by multiple bowel movements a few days later
- Increased gas
- Abdominal pain
I've since found out that 80-90% of survivors who have a surgery similar to mine will have some degree of LARS.
I've since joined a support group on Facebook and learned SO SO MUCH from people JUST LIKE ME!!
I've since met with that same gastro doc who told me that a normal rectum is 20-22 centimeters long. I am on the petite size so I probably had a 20 cm rectum. I had 16 cm removed because of the tumor. Which leaves me with a grand total of 4 cm of rectum to store my waste. No wonder I'm in the bathroom a dozen times a day. No wonder!!
On the "How Severe is your LARS" test I got a 41... out of 42. Which means I have what is considered 'Major LARS'
I've since had a renewed hope and optimism that I can figure this all out.
The great majority of medical professionals have never heard of this because we are the guinea pigs. Years ago, if someone had a low lying rectal tumor, their only option was a permanent colostomy bag. With medical advances, there are now more options and bowel function can sometimes be saved. But when you interrupt the communication between the colon and the rectum (are you loving all this butt talk?!) then you have problems. Not even to mention the complications from radiation. And doctors are just now starting to figure out that there are pretty significant quality of life issues involved. Some LARS sufferers can even quality for permanent disability due to the complications and issues that make working outside of the home nearly impossible. Some even choose to go back to the bag because they can't take it anymore.
Look, I hated that bag. I hated it more than words can say. It messed with me in more ways than I could ever even attempt to express. But to be completely honest there have been times when I have considered going back to it. It's been rough friends.
I've since had a renewed hope and optimism that I can figure this all out.
The great majority of medical professionals have never heard of this because we are the guinea pigs. Years ago, if someone had a low lying rectal tumor, their only option was a permanent colostomy bag. With medical advances, there are now more options and bowel function can sometimes be saved. But when you interrupt the communication between the colon and the rectum (are you loving all this butt talk?!) then you have problems. Not even to mention the complications from radiation. And doctors are just now starting to figure out that there are pretty significant quality of life issues involved. Some LARS sufferers can even quality for permanent disability due to the complications and issues that make working outside of the home nearly impossible. Some even choose to go back to the bag because they can't take it anymore.
Look, I hated that bag. I hated it more than words can say. It messed with me in more ways than I could ever even attempt to express. But to be completely honest there have been times when I have considered going back to it. It's been rough friends.
There is no magical treatment. No pill I can take. It's not just simply not eating a certain food and now I'll be fine. Although diet does help I'm figuring it out day by day. I still have bad days. I still have days where I'm curled up in a fetal position in my bed with a heating pad. Or days that I spend way more time in the powder room than I would like. But it's one more piece to my crazy little puzzle I've got going on and after three LONG years I am incredibly happy to have found an answer.
There was a discussion this past weekend on the support group Facebook page and someone asked me how I'm doing. After going through a variety of things that have worked or not worked for me I said the following :
" I feel like knowing about LARS - knowing that this thing that has dominated every moment of my life since my reversal 3 years ago - knowing it is real and there are people that get it and that there are things that can help, I have a new lease on life. I’m just so happy to still be here, you know? I’m figuring out my tricky broken body, but I’m still here. How amazing is that?!"
There was a discussion this past weekend on the support group Facebook page and someone asked me how I'm doing. After going through a variety of things that have worked or not worked for me I said the following :
" I feel like knowing about LARS - knowing that this thing that has dominated every moment of my life since my reversal 3 years ago - knowing it is real and there are people that get it and that there are things that can help, I have a new lease on life. I’m just so happy to still be here, you know? I’m figuring out my tricky broken body, but I’m still here. How amazing is that?!"
I'm so glad you are getting answers.
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