The Colon Club

heiders33 wrote:If you want, you can read about my experience on my thread here: viewtopic.php?f=1&t=59411&start=15#p472865

Also, my surgeon told me about this procedure for months before it took place, so I searched for it on this forum and found lots of helpful information.

Hope this helps!

I'll have a look (bookmarked). I mentioned it to my manager and she says that she's had several of them (Crohn's) and said some were awful and some were easy. I'll definitely read up.

Yep the barium enema is fun. I had it in the hospital 4 weeks after by resection when I had my bowel blockage. My surgeon told me if he had to do surgery to remove scar tissue causing the blockage he would reverse my ileo right there. Since the blockage didn't resolve within a week of walking with an ng tube, I had to have surgery. First was the barium test to be sure everything was healed. Yep there is alot of leakage after. Since I was already in the hospital it wasn't too bad. I'm sure your surgeon will talk to you about scheduling it before reversal surgery. Can't believe you're done with treatment, time did fly by, but probably not fast enough for you. It was along year for me I remember. Since I had my reversal before adjuvant therapy that phase was eliminated. Keep us updated

1.5 weeks out from chemo and most of the tingles are gone. I still have them in my toes though. The fingers have some numbness but I can generally function with them. Hoping to get all of my feeling back there.

Mike, I am happy for you moving soon to the next phase of treatment, I have read your story and am grateful that you have shared for those of us coming behind you. I wish you the very best.

I had the appointment with the surgeon today and she laid out what most of the folks here already told me. She had either an intern or resident in there as well - he asked me questions before the doctor came in. I have the reversal the last Monday of July and the preop stuff the week before. They are going to do the Barium Enema then. The surgeon said that they don't actually use Barium anymore and she gave me the name of the chemical. I received a packet which I need to decode into a timeline.

She said that I should ask my oncologist about the port as to whether to leave it on or take it out. If he says take it out, then the surgeon can do that as well. I don't have to do the colonoscopy prep for this surgery. Just no food after midnight. The hospital stay is 2 days and she offered me a choice of two hospitals - The Faulkner - and I'd get a private room there, or B&W which has semi-private rooms unless I want to spend $400/night for a private room. I just don't want another roommate with something really infectious that they were going to call the CDC in for.

I'm getting a lot of walking in, typically 100 miles per week for the past two weeks.

I really would rather run though.

Something I've learned through a lot of walking.

If you eat dinner and do a lot of walking (say 2-3 hours), a lot of the stuff that you ate will head into the bag over time meaning that you don't have to worry as much about the bag filling up overnight (gas and output). I've been waking up only once a night instead of twice with the big walking project. It makes a nice difference in sleep quality.

Yes, it also helps to eat dinner early

Atoq

NHMike wrote:I had the appointment with the surgeon today and she laid out what most of the folks here already told me. She had either an intern or resident in there as well - he asked me questions before the doctor came in. I have the reversal the last Monday of July and the preop stuff the week before. They are going to do the Barium Enema then. The surgeon said that they don't actually use Barium anymore and she gave me the name of the chemical. I received a packet which I need to decode into a timeline.

She said that I should ask my oncologist about the port as to whether to leave it on or take it out. If he says take it out, then the surgeon can do that as well. I don't have to do the colonoscopy prep for this surgery. Just no food after midnight. The hospital stay is 2 days and she offered me a choice of two hospitals - The Faulkner - and I'd get a private room there, or B&W which has semi-private rooms unless I want to spend $400/night for a private room. I just don't want another roommate with something really infectious that they were going to call the CDC in for.

Sounds like you have a good roadmap now!

It appears they are planning to use an iodine-based (rather than barium-sulfate) contrast for your leak test, probably something like Gastrografin.

And I quite imagine your oncologist will recommend removing your port during the reversal surgery since you're finished with treatment. You're already knocked out anyway so it's handy. Many times they pull in an IR doc to remove it so don't be surprised if that happens.

Great mileage on your walking! Keep up the good work. You'll be back to running soon!

Juliej

I always eat my dinner early. I find that even after reversal it helps with sleep. Not needing to get up during the night to go to the bathroom.

juliej wrote:Sounds like you have a good roadmap now!

It appears they are planning to use an iodine-based (rather than barium-sulfate) contrast for your leak test, probably something like Gastrografin.

And I quite imagine your oncologist will recommend removing your port during the reversal surgery since you're finished with treatment. You're already knocked out anyway so it's handy. Many times they pull in an IR doc to remove it so don't be surprised if that happens.

Great mileage on your walking! Keep up the good work. You'll be back to running soon!

Juliej

Yup, that's what it will be. I only remembered that it had a funny name.

I have labs next Tuesday and see the oncologist on Thursday. I have CEA anxiety.

Praying for you to have great CEA results and excellent visit on Tuesday!

You got this Mike. I am taking notes.
S

Glad to see your moving on Mike. Very happy for you my friend. I have done 9 rounds of Chemo so far and I told my Onc I need a break, extra week off, but I don't want to do anymore. It's so tough and I am having a hard time handling it. Especially the nueropathy in my hands and feet. My last treatment was 6/20 and still have neuropathy, your lucky MIke yours is going away.

From what I reading its 9 treatments vs 12 is very negligible and would not make a difference. Just want to get over this nightmare get my reversal and move on.

Rikimaroo wrote:Glad to see your moving on Mike. Very happy for you my friend. I have done 9 rounds of Chemo so far and I told my Onc I need a break, extra week off, but I don't want to do anymore. It's so tough and I am having a hard time handling it. Especially the nueropathy in my hands and feet. My last treatment was 6/20 and still have neuropathy, your lucky MIke yours is going away.

From what I reading its 9 treatments vs 12 is very negligible and would not make a difference. Just want to get over this nightmare get my reversal and move on.

Hi Rikimaroo
I totally get how your feeling, I have only one last round and am terrified. The damage this is doing to my body in places and ways no one but I see and feel is awful. I just want a life with my family and this to be done. It takes me a full two weeks to feel sort of right after an infusion, my taste buds and tongue never are right, nor is my tolerance of cold, blowing air.
Hold on.
Susan

Rikimaroo wrote:Glad to see your moving on Mike. Very happy for you my friend. I have done 9 rounds of Chemo so far and I told my Onc I need a break, extra week off, but I don't want to do anymore. It's so tough and I am having a hard time handling it. Especially the nueropathy in my hands and feet. My last treatment was 6/20 and still have neuropathy, your lucky MIke yours is going away.

From what I reading its 9 treatments vs 12 is very negligible and would not make a difference. Just want to get over this nightmare get my reversal and move on.

It definitely gets harder as you move on and you worry about permanent effects. My neuropathy issues never really cleared up in the later cycles, they just declined. I still have the tingles three weeks after the end of the Xeloda and the stiff finger joints but it's manageable. If they keep declining slowly, then I can live with that.