Not sure why this happened

[Delinda2]

Thank you for your strength & for standing up for the rest of us. XXOXO, Delinda

[cathy123]

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]

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]

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

[JudeD59]

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.

Thank you for sharing that with me, Janie. It made me cry because I could feel your pain in your words. It's been almost 3 years since it happened to you and I could still feel your pain. How sad is that?

It means so much to me that several people, like you, have come forward to say that they had similar experiences and similar reactions. I didn't want to post about it at first because I didn't want to look like a wuss who couldn't even take a barium enema without complaining. I don't know why it was so painful for me and wasn't for so many others and I probably will never know for sure. I've had a barium enema before for an unrelated problem before my cancer diagnosis and didn't have a problem, no major pain, no trauma. And I had to do Fleet enemas before some of the tests and procedures during my cancer treatment and again, no pain, no trauma.

I've written a letter to my surgeon and I'm going to call his office tomorrow morning and find out what their email address is. I want him to have the letter before my reversal on Wednesday. The hospital where I had the leak test isn't my usual hospital, it's one of their affiliated smaller hospitals. They sent me there because it was the only opening in the schedule before my reversal. I've told my surgeon in no uncertain terms that I will never have a barium enema again for any reason and I won't be going to that affiliate hospital again for any treatments or tests. I hope he will address my concerns and not close ranks and make excuses for another member of the medical establishment. I'll be very disappointed in him if he chooses to brush my complaint aside in order to protect the hospital or for whatever reason.

After so many surgeries and so many hospital stays, I'm usually a good advocate for myself. I don't know why I didn't insist they stop the test immediately when the pain was so severe. My only guess is that I was in shock and in so much pain that I couldn't even speak coherently. It really frightens me that the staff didn't seem surprised by my pain, as though they see a reaction that strong on a regular basis. They shouldn't, if they are doing the test correctly.

Thank you again for sharing. I know that in order to help me, you put yourself through reliving an awful experience I'm sure you would love to be able to forget. The fact that you did it means more to me than I can express and makes me feel a lot less alone.

I'm so grateful I found this board and its members.

Judy

[cathy123]

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!

[ozziej]

Sorry for hijacking your thread Judy but I just wanted to say hi to Cathy. Have been thinking about you Cathy and how you've been going. I'm glad to hear that things are improving. As you say, not what you would have imagined yourself putting up with a year ago, but still manageable. That describes me to a tee .
Best of luck with the new job.
cheers
Jan

[Sams wife]

" 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."

This was hubby experience , along with being soaked & wet from pain. SOAKED. I hope he listens to your email. I'm sure he will tho. Good luck tomorrow!!

[JudeD59]

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!

So good to hear from you! Congratulations on the new job and good luck! That's exciting news! I'm glad things are going a bit better, but wish you'd seen the improvement you were hoping for. It's still early yet. I remember reading member's posts where they said they had a big improvement at 8 months or a year.

I hope we both have successful days tomorrow.

Judy