cathy123 wrote:Oh Judy - I am so sorry that you can not catch a break during any step of this awful disease. I remember that the radiologist also had not read my surgeons instructions and didn't quite believe what I told him the dr wanted. But I definitely did not have that much pain.
JJ2212 wrote:Hi Judy,
Your experience is eerily similar to one I had. It was during my first ever ct scan, just days after being diagnosed. I had already had many drs examine me, ie shove their fingers up my butt, because my tumor was very low and easily palpable. There was pain, but I was able to grin and bear it. Then came the ct scan with enema, and that changed my whole understanding of the word pain. The pain hit the instant the tech inserted the tube in my rectum, upon which I yelled out loud. I had never done that before nor have I done since, but the pain was so bad I couldn't stop myself from yelling (full disclosure: i also swore like a sailor). It's like the tube stabbed my ulcerated tumor dead on. The pain only got worse when they injected the contrast liquid and hit the sky high level when they inflated the balloon to keep it all in. The techs were useless, seemingly not understanding why I was being such a wuss. I don't think they had a clue that I was there because I had rectal cancer. They just had the request sheet for the test and that was it.
I didn't cry during the 12 agonizing minutes it took for the scan. But once the tube was removed and the pain stopped, I started crying, shivering and my teeth chattered non stop. I think I was in shock. The tech tried to ask me a few questions to better understand what had happened but I could barely speak. I was so badly shook up that I didn't go to work the next day.
To this day, almost 3 years and multiple tests, exams, procedures and surgery later, that remains my single worse experience ever. Period.
The reason I'm sharing it with you is because I wanted you to know that I completely understand how you feel. I'm so sorry Judy that you had to go through this and I hope you get some satisfaction by adressing it with your surgeon and the hospital. Also, I think others should know that if any procedure, exam, test, etc is painful beyond their tolerance level, they should speak up immediately. It's OK to ask for a sedative or a change in procedure if there is too much pain.
Take care and good luck with your upcoming reversal surgery.
Janie.
JudeD59 wrote:cathy123 wrote:Oh Judy - I am so sorry that you can not catch a break during any step of this awful disease. I remember that the radiologist also had not read my surgeons instructions and didn't quite believe what I told him the dr wanted. But I definitely did not have that much pain.
Thanks, Cathy. I've missed talking to you and I sincerely hope things are going better in your reversal recovery. Please let us know if you've had improvement or found any solutions to the problems you were having. I'm a mom, I worry.
Judy
cathy123 wrote:JudeD59 wrote:cathy123 wrote:Oh Judy - I am so sorry that you can not catch a break during any step of this awful disease. I remember that the radiologist also had not read my surgeons instructions and didn't quite believe what I told him the dr wanted. But I definitely did not have that much pain.
Thanks, Cathy. I've missed talking to you and I sincerely hope things are going better in your reversal recovery. Please let us know if you've had improvement or found any solutions to the problems you were having. I'm a mom, I worry.
Judy
Hi Judy - I am doing better. Still have trouble with control and have some accidents, but not quite as bad, and usually can be dealt with by just changing the pad I wear all the time. I am down to maybe 10 bathroom visits a day, and for whatever reason even when I am having a really bad episode or day it is not painful anymore just annoying (and sometimes embarrassing). So not a situation I would have imagined being happy with a few years ago, but I am getting on with my life. I may try enemas at some point but since I am seeing improvement want to keep trying for now.
I am actually starting a new job tomorrow, so have been getting ready for that. I am really hoping I don't have bathroom issues there. Usually nights are worse, so hopefully I will get thru ok.
I have a colonoscopy, ct scan, and bloodwork coming up in March - will be good to get past that! Nerves are already starting.
Hope your reversal goes really well! Last surgery - yeah!
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