5 Years ago today

Annabelle41415 said:

Welcome

You're welcome and didn't mean to bring your name up but because I've been feeling the same way, thought it should resurface again.  We want to continue on with our life, but after what we have been through, the once dignity that you had that is now on display for every doctor you go to and with us rectal patients - everyone wants to put their figure up your anus and swoop it around and when you have a rectal tumor - it hurts.  My dignity has gone out the window and my modesty is nevermore.  I've even talked to people about my poop issues. They are probably thinking why are you discussing this, but when you go through this, nothing is off the table

Hugs!  Kim

I had to go to the Doctors this week with my ever sore bum. I knew of course that I'd have to be examimed but when the medical assistant pulled out the anal speculum I said "I don't think so".

When the Doc came in I told him I'd be having no foreign object poked up my bottom, thank you. And I ddin't. HA!

Yeah, no dignity left. 

I know having rectum cancer sucks! It changes a person for the good and the bad. I was diagnosed Stage IV in January 2011 with cancer in the rectum and liver. I went into remission in the rectal area November 2011. Too bad the liver didn't want to cooperate as well. I have come to the opinion that once a person has rectum cancer, one never operates the same in that area. I was thankful when I could have a "squirt" come out. Constipation was a constant battle for me. The fiber pills and laxatives in pill format never worked for me. Lactulose did work, but taking that twice a day caused diarrhea and lots of accidents. Unfortunately for me in 2013 I had a side effect from the radiation two years after it was done. I kept being hospitalized for constipation and bleeding to the point that nothing was coming out. I complained about the pain and was doubling over. The cancer was in remission in the rectum, but the pain was still there. I was on so many laxatives that if I hiccupped, a squirt would come out wherever I was. Basically, think of changing a diaper after a blowout. CTs were done. The doctor was thinking I was losing it, but knew I never complained unless the pain was uncontrolled. It took three months and a week at a time in the hospital each month for them to finally figure out what was happening. Oh yeah, three radiologists couldn't even see what was wrong. Finally in March 2013 they found out what was going on. My rectum had collapsed. Gas could get through, but nothing else. Hence, surgery took place and a stoma was created. I was not excited for this, but did not have a choice.

Trouble over! Not! I was so lucky that what could go wrong did. Over the next three months four surgeries were performed to correct infections, incorrect healing, etc. This seemed to be worse than the actual cancer. 2013 has not been the most fun for me in the rectum area. I have an ostomy now and poop in a bag. Finding clothes to cover up the bag in my abdomen area is not easy. One can wear those “slimming” garments to help cover up the bulges, but too much pressure on the stoma brings pain and swelling. Finding pants is also horrible since the top band of the pants needs to be lower than the stoma. If it is above the stoma, the material has to be flexible. Pants hitting right at the stoma cause problems. One cannot control when you are going to poop and fill up the bag. At least with my rectum, I had some control. I can’t even control when gas is going to come out. Some people have thought the gas sounds were hungry sounds from my stomach. Just try and hug someone and they hear that or the bag starts growing during the hug. Yep, my world certainly has changed in the poop department.  At least I can’t get blamed for “farting” and smelling up the area. But, I do jokingly state that I can “burp” my bag. The one thing that is hard is that I'm divorced and was hoping to find another partner. Having an ostomy really does affect the love life. This is one area that cancer has beaten me.

For everyone who has rectum cancer, having an ostomy is a possibility. Some are temporary and some are permanent. If you are constipated and it is backing up too much causing other health issues, this might be an area you need to look into. If you have one done, you still have to go to the bathroom often to empty the bag, but at least it is coming out and it’s not just a squirt. You still have to watch what foods you eat and how it affects you. I am still leery in eating new foods and tend to stay with the “basics” when eating out.

Yeah rectum cancer sucks. One could say it is full of “sh**”. 

Annabelle41415 said:

Yup

Sore butt but they don't seem to understand.  It's humbling fact that you've accepted all the things you go through because of this disease is a norm for us now - yuck - I'm still wondering why doctors would go into this profession

Kim

I have often wondered why anyone aspiring to become a doctor would choose oncology.

HollyID said:

Hugs Kim!

Long time, no see!  I'm so sorry you're angry.   I'm not angry per se, but it's frustrating to have to know where every toilet in a 20 mile radius is and how fast does it take me to get there.  I had severe anxiety about traveling to our daughters house for Thanksgiving because it's eight hours away.  How am I supposed to last in a car for even an hour without knowing if my guts are going to have a sudden, toxic reaction to whatever.  What a life we have, huh? 

Congratulations on making it to five years.  That's quite a milestone!  Here's to another five... and another five after that, and another five after that, and another five after that...and another .... and another...

 

P.S.  Have you by chance appealed your SSDI veto?  I'm sorry, but going to the bathroom 20 times a day is a disability, no matter what they say!

 

 

Kim,

I am sorry this disease is still causes you problems, that is certainly a reason to be angry.  But I am so happy to see you are still here.  Congrats to your 5 yrs too!!!!