The Colon Club

Lee wrote:I was about 3 yrs out from surgery, scan picked up some swollen nodes in my stomach area. My Onc was stressing to me not to worry. As she put it, you have 2 young kids, something tells me one of them brought some bug home and your nodes are doing their job, fighting off some infection. Yep, 6 months later, nodes were fine.

I was cut open, it took about 6-8 weeks to recovery from this surgery.

Good luck,

Lee

Thanks Lee. I love my job and I have a stainless steel immune system for most things except cancer. Take care.

Caat55 wrote:Lots of questions here....
Stanford is participating in study of a sealant they put over internal stitches, Has.any one heard of this? Two year follow up. Do I want to invest this much time? Travel is about three hours one way to hospital?...

For those of you who are interested, here is some information on the clinical study at Stanford. Since it is a Phase 3 randomized, single-blinded, controlled trial with two groups, you would have a 50/50 chance of being assigned to the active treatment group, but you would not be told which group you had been assigned to. Whatever group you are assigned to you would still have to be available for followup checkups for the next 17 weeks at least. (I can't tell what else they require for followup checkups, but I'm sure they would at least require a leak test using contrast solution just before the time of the ileostomy reversal.)

Efficacy and Safety of LifeSeal™ Kit for Colorectal Staple Line Sealing
Clinical Trial. NCT02907385

https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=787572#link/ContactInfo_CDR0000787572

Stanford is an NCI designated Comprehensive Cancer Center, and the Principal Investigator of this trial there is a highly respected, Board Certified Colorectal Surgeon:

Stanford Cancer Institute
https://www.cancer.gov/research/nci-role/cancer-centers/find/stanfordci

Andrew Alan Shelton, M.D.
https://profiles.stanford.edu/andrew-shelton?tab=bio

Yes, Dr. Shelton is my surgeon. It is double blind, first year follow up is same as for all patients as they have explained it. I will read the links see what more I can find then in literature they supplied.
Thank you O Stoma Mia

Caat55 wrote:Lots of questions here.
My LAP is scheduled for 1/31/18. Finished neoadjunct 12/8/17. It is a terrible month, my skin on legs, genital area for fried. Finally feeling "Normal" still issues with wrinkly fingers, itchy skin, but walking a couple miles a day.

Stanford is participating in study of a sealant they put over internal stitches, Has.any one heard of this? Two year follow up. Do I want to invest this much time? Travel is about three hours one way to hospital?

Also planning for post op time off. I am a pediatric occupational therapist. Time on the floor, table top with kids, lots of ups and downs, into and out of vechicle. Can any one tell me about healing time? Ileostomy care in public restrooms? Working during Oxi infusions/xeloda which are schedule for 4 months, on a week off a week. I can do this closer to home, hospital about 30 minutes away. Should I get someone to drive me?

I emptied my ileostomy bag in dozens of public restrooms -- movie theaters, malls, museums, grocery stores, etc. I carried a small squirt-type plastic bottle to rinse out the bag. I also wore a "belly band" to support the bag under my clothes. Belly bands can be found in the maternity section of stores like Target. Basically, they are stretchy bands that support the abdomen during pregnancy, but they work perfect for making sure the bag stays tucked close to your body. In the winter I wore tights over the bag instead and that works very nicely too.

Xeloda can cause something called "HFS" (hand-foot syndrome) so I'm not sure how that might impact your job as a pediatric occupational therapist. You might talk to your onc about that. Make sure you take care of your hands and feet from the very beginning. Use a heavy lotion (Aquaphor, Bag Balm, etc.), ideally with cotton gloves and socks at night. Avoid any heat or abrasion to your hands/feet. Even something as simple as holding a pruner can cause the symptoms to get worse.

Hope this helps!
Juliej

juliej wrote:

Caat55 wrote:Lots of questions here.
My LAP is scheduled for 1/31/18. Finished neoadjunct 12/8/17. It is a terrible month, my skin on legs, genital area for fried. Finally feeling "Normal" still issues with wrinkly fingers, itchy skin, but walking a couple miles a day.

Stanford is participating in study of a sealant they put over internal stitches, Has.any one heard of this? Two year follow up. Do I want to invest this much time? Travel is about three hours one way to hospital?


I emptied my ileostomy bag in dozens of public restrooms -- movie theaters, malls, museums, grocery stores, etc. I carried a small squirt-type plastic bottle to rinse out the bag. I also wore a "belly band" to support the bag under my clothes. Belly bands can be found in the maternity section of stores like Target. Basically, they are stretchy bands that support the abdomen during pregnancy, but they work perfect for making sure the bag stays tucked close to your body. In the winter I wore tights over the bag instead and that works very nicely too.

Xeloda can cause something called "HFS" (hand-foot syndrome) so I'm not sure how that might impact your job as a pediatric occupational therapist. You might talk to your onc about that. Make sure you take care of your hands and feet from the very beginning. Use a heavy lotion (Aquaphor, Bag Balm, etc.), ideally with cotton gloves and socks at night. Avoid any heat or abrasion to your hands/feet. Even something as simple as holding a pruner can cause the symptoms to get worse.

Hope this helps!
Juliej

Thanks Julie. I find myself thinking about where I will empty the bag as I travel around for work a lot. Good to know it's doable. I should have more info after I meet osteomyelitis nurse on Friday. I have been putting lotion, utter cream, etc. on constantly. My fingers got all shriveled this past week, notice They feel things funny, slippery. My husband joked I could rob a bank as I don't have any fingerprints
S

I got my MRI results today.
Looks like tumor is gone but lymph nodes inflamed but the perirectal lymph node was the concern from previous scan and it is now smaller(was 6).
Has anyone else had anything similar? I have had a terrible time with the radiation, pain, swelling, etc which may be what's reflected here.

Peeps what can you tell me?

Lymph nodes: Pelvic lymph nodes with the largest measuring:
- Left inguinal lymph node measuring up to 10 mm (15/231).
- Right inguinal lymph node measuring up to 8 mm (15/214).
- Left external iliac lymph node measuring up to 12 mm (15/159).
- Right external iliac lymph node measuring up to 6 mm (15/161).
- Perirectal lymph node measuring up to 5 mm (5/17).
IMPRESSION:

1. Circumferential thickening and edema of the inferior rectum without discrete mass, which renders soft tissue differentiation difficult. These changes likely represent post-treatment changes. Recommend comparison with prior imaging for better interpretation.
2. Multiple pelvic lymph nodes remain non specific.

I received phone call yesterday Lifeseal trial has been cancelled. PA wasn't sure why but just wanted me to know I wouldn't be getting it Wednesday. Sad/glad one less treatment and few hoops to jump through.
S

Sending prayers and lots of good thoughts for your upcoming surgery on Wednesday!!! You'll be in my heart and mind all day. Hope you have a successful surgery and an easy recovery. Think strong thoughts. You can do this!

Caat55 wrote:Thanks Julie. I find myself thinking about where I will empty the bag as I travel around for work a lot. Good to know it's doable. I should have more info after I meet osteomyelitis nurse on Friday. I have been putting lotion, utter cream, etc. on constantly. My fingers got all shriveled this past week, notice They feel things funny, slippery. My husband joked I could rob a bank as I don't have any fingerprints

I lost my fingerprints from Xeloda too and the thought of being a cat burglar was very tempting! We could have been a team!

Do be careful holding things though, especially heavy things like a glass of water. I didn't realized those little lines in our fingerprints also serve as "grips" to hold things. That's why everything feels so darn slippery. I wore cotton gardening gloves around the house and that helped. They were white so I looked a little like Minnie Mouse but it was easier to hold things!

Hugs to you,
Juliej

Thank you for all the good thoughts. So nervous today probably don't need colon prep.
I got this and you all help.

Thank you,
Susan

Good luck with the surgery! Wish you a quick recovery!

Claudia

Good luck tomorrow! Sending good thoughts your way!

Done with surgery. Boy my abs are sore, feels like I went to yoga. Sat up in chair for a bit but got sick, I don't do aneasthesia well. Lots of little holes, a drain, ileostomy and catheter. Surgeon told my husband it went well. I spoke to resident who was friendly, checked tubes but didn't share much.
Moving forward to dinner, cream of rice and white toast.
Susan

Caat55 wrote:Done with surgery. Boy my abs are sore, feels like I went to yoga. Sat up in chair for a bit but got sick, I don't do aneasthesia well. Lots of little holes, a drain, ileostomy and catheter. Surgeon told my husband it went well. I spoke to resident who was friendly, checked tubes but didn't share much.
Moving forward to dinner, cream of rice and white toast.
Susan

It's amazing the number of tubes coming out of your body post-surgery! I had a double-lung surgery at the same time as my ileo reversal, so I had two lung pumps (one out of each side of my chest), a Foley catheter, and an epidural catheter/pain pump. It took 15 minutes just to get me untangled enough to go to x-ray!

Next step is pulling out those suckers. If you are on a pain pump, they will be switching you to oral pain pills soon. Make sure you get up and walk around as much as possible - that speeds up the healing. Hold on to an IV pole (or husband!) for support. Eat as much as you can to gain back your strength.

Sending lots of healing energy your way!
Juliej

PCA, med pump is gone. Have a drain, catheter and ileo. Spent 5 hours in chair did two laps. Emptied bag and changed it with stoma nurse. Now back to bed for a nap.

Caat55 wrote:PCA, med pump is gone. Have a drain, catheter and ileo. Spent 5 hours in chair did two laps. Emptied bag and changed it with stoma nurse. Now back to bed for a nap.

It looks like you are making very good progress towards recovery and early discharge. Gradually, all of the tubes and other paraphernalia (except for the stoma bag) will be removed before you are discharged. You didn't mention anything specific about the IV lines. Do you still have tubes leading to an IV catheter, or have they taken those away already? These are the tubes for giving you IV fluids, IV medications, or IV nutrients whenever necessary

The next time you see the Surgeon or the Resident, you can ask what they are looking for in order to know that you are ready for discharge. Normally, they have a checklist of conditions that have to be met before you will be discharged. For example, they need to know that your bowel is no longer under temporary paralysis from the anaesthesia. They also need to know that you are able to eat well and to excrete well. Sometimes they look at the color and amount of output in the drain-tube bag, etc.

It would be good if they could give you some explicit instructions on what to do and what not do do once you have been discharged -- i.e., what kinds of things to eat or not to eat, what kinds of physical effort to do or not to do, what kinds of meds to take or not to take, etc.

There are general instructions like this posted on many hospital websites (see links below), but it would be best if you could get a set of instructions personalized for your particular circumstances. Take care, and let us know how thing are going. After you are discharged, you will have about a month or so of rest and recovery before starting your 4 months of XELOX regimen.

Caring for Yourself after Surgery
https://www.oregonsurgical.com/patient-info/instructions/colon-resection-surgery-polyps/

Colon Surgery Diets
https://www.verywell.com/colon-surgery-diets-797399