The Colon Club

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 am a water treatment plant operator and I took a month off after surgery. You may want to speak to your surgeon about the physical nature of your job and see what he has to say. As for ileostomy care in public restrooms, I have never had to change a pouch in public. To make clean up after emptying easier for me, I use a squirt bottle to put water in my pouch. I swish it around then dump it. It makes cleaning up the opening of the pouch much easier than trying to wipe up sticky poo with just toilet paper. I needed a driver when I had my oxaliplatin infusions. It made me feel sort of drunk afterwards and I had a kind of vertigo-like feeling. Everyone reacts differently though, so see how you feel and go from there.

Caat:
I am somewhat familiar with LifeSeal and its clinical study and pending FDA approval. It is an ingenious product, and if you have the opportunity to participate through Stanford it might be well worth the additional time/energy of travel to the Stanford University medical campus.

Lifeseal is a surgical sealant, being used to reinforce/strengthen the round tract of line sutures in creating a colo-rectal or colo-anal anastomosis. One of the more concerning risks of a LAR is leaking of fecal material at the anastamosis site - and sequel was of peritonitis and/or sepsis. Nasty. The clinical study will be looking at Lifeseal’s ability/role in lessening the risk/occurrence of an anastomosis leak.

I survived systemic sepsis from an extensive bowel perforation. It was a harrowing ordeal.

I was a physical therapist by profession. Your ability to return to work as a pediatric occupational therapist will depend on your energy levels post surgery and caution to prevent a hernia (parastomal hernia if you have a temporary stoma and incisional hernia).

You may want to look into a hernia prevention wrap. These are usually elastic-Lycra-spandex lumbo-sacral binders or “belly binders.” A small company in the United Kingdom, called “Comfizz,” makes a speciality line of hernia prevention and ostomy wear. I wear Comfizz undergarments and highly recommend them. Comfizz won an award from the British NIH for its high quality and innovative designs.

http://www.comfizz.com

Sending you healing strength and sincere best wishes,
Karen

You might want a driver for the first infusion. I drove (and still am driving myself) each time. The first couple of times I had a slight fuzzy head feeling and just took back roads, which are slower and less traffic, home.

I live 25 minutes away from where I get my infusion.

Aqx99 wrote:I am a water treatment plant operator and I took a month off after surgery. You may want to speak to your surgeon about the physical nature of your job and see what he has to say. As for ileostomy care in public restrooms, I have never had to change a pouch in public. To make clean up after emptying easier for me, I use a squirt bottle to put water in my pouch. I swish it around then dump it. It makes cleaning up the opening of the pouch much easier than trying to wipe up sticky poo with just toilet paper. I needed a driver when I had my oxaliplatin infusions. It made me feel sort of drunk afterwards and I had a kind of vertigo-like feeling. Everyone reacts differently though, so see how you feel and go from there.

Thank you for the information. I will follow up with oncologist, plan for a ride to first apps. Love picking the collective brains here.

MissMolly wrote:Caat:
I am somewhat familiar with LifeSeal and its clinical study and pending FDA approval. It is an ingenious product, and if you have the opportunity to participate through Stanford it might be well worth the additional time/energy of travel to the Stanford University medical campus.

Lifeseal is a surgical sealant, being used to reinforce/strengthen the round tract of line sutures in creating a colo-rectal or colo-anal anastomosis. One of the more concerning risks of a LAR is leaking of fecal material at the anastamosis site - and sequel was of peritonitis and/or sepsis. Nasty. The clinical study will be looking at Lifeseal’s ability/role in lessening the risk/occurrence of an anastomosis leak.

I survived systemic sepsis from an extensive bowel perforation. It was a harrowing ordeal.

I was a physical therapist by profession. Your ability to return to work as a pediatric occupational therapist will depend on your energy levels post surgery and caution to prevent a hernia (parastomal hernia if you have a temporary stoma and incisional hernia).

You may want to look into a hernia prevention wrap. These are usually elastic-Lycra-spandex lumbo-sacral binders or “belly binders.” A small company in the United Kingdom, called “Comfizz,” makes a speciality line of hernia prevention and ostomy wear. I wear Comfizz undergarments and highly recommend them. Comfizz won an award from the British NIH for its high quality and innovative designs.

http://www.comfizz.com

Sending you healing strength and sincere best wishes,
Karen

Thank you Karen. I will look into the wrap, garments. As to the Lifeseal, 50/50 chance It gets used on me, so sounds likenothing to lose by trying and possibly a better, safer surgery.

Robino1 wrote:You might want a driver for the first infusion. I drove (and still am driving myself) each time. The first couple of times I had a slight fuzzy head feeling and just took back roads, which are slower and less traffic, home.

I live 25 minutes away from where I get my infusion.

I live in the Sierra Nevada mountains so every road is a back road with single lane each direction. I will arrange a ride first time for safety. We're your infusions 14 days apart? Did it get harder like the radiation or is it pretty stable, similar each time?

Susan

Caat55 wrote:

Robino1 wrote:You might want a driver for the first infusion. I drove (and still am driving myself) each time. The first couple of times I had a slight fuzzy head feeling and just took back roads, which are slower and less traffic, home.

I live 25 minutes away from where I get my infusion.

I live in the Sierra Nevada mountains so every road is a back road with single lane each direction. I will arrange a ride first time for safety. We're your infusions 14 days apart? Did it get harder like the radiation or is it pretty stable, similar each time?

Susan

Yes, 14 days apart. After I got used to the routine and my body got used to the chemo feeling, the fuzzy went away. It never got harder. I would say that it was pretty stable from infusion to infusion.

I did have to drop the oxaliplatin after 10 rounds. The neuropathy started to show up and my oncologist didn't want lasting damage. We had lowered it about the 3rd session. Hmmm. That's about the time the fuzzies went away.

I'm currently doing 5FU + Avastin.

I work a desk job and took two weeks off after surgery. That worked out fairly well for me but I did a lot of weight training before surgery to make recovery easier.

The bag was definitely a challenge and it really helps if you have someone to help you change the bag. The challenges of the bag:

- Changing it. You'll get instructions from hospital staff or a WOC nurse. Pay close attention and take notes. If you have someone that can help, have the person there to watch.
- Acquiring supplies. This has been frustrating for me as the companies work by phone and can screw up orders. This is if you're using insurance to pay for the supplies.
- Determining supplies. There are so many products out there that it may be hard to decide on them - and then hard to figure out how to use them. They provide samples but it can be a little challenging getting into the stream for these.
- Bathrooms - I like handicapped bathrooms as they have the bars or someplace where I can lay out the toilet paper. You have to figure out which position you like for emptying the bag as well.
- Carry your own toilet paper while traveling. Sometimes public restrooms are out or they toilet paper dispenser is gone. I found this out on a recent trip.
- Assemble a travel kit if you need to travel. Have backup supplies in case you lose your travel kit. Supplies are hard to come by on the road.
- I find the Cavilon Spray to be far more convenient than the barrier wipes but insurance only covers the wipes so I pay out of pocket for the spray. Also did that with the powder.

I'm on Xeloda with Oxaliplatin on a three week cycle. Infusion first day, Xeloda first 14 days, then a week off. The first week on the second cycle has been brutal for me. I'll go over symptoms in another post. Can I work? Yes. But there are a lot of physical challenges with the side-effects.

One other note: you're white blood counts will be lower and you'll be more susceptible to getting sick so there is the recommendation to avoid crowds and people in general. I can work at home if I want to but often go into the office. Working with people can make this challenging.

Chemo is cumulative. You will feel more side effects the longer you are on it. I felt fine after the first two, then had to have my doses lowered a couple of times due to side effects. Don't be discouraged if you have to wait an extra week due to your blood counts. My platelets and neutrophils were low by the end of my chemo. I had to wait an extra week for cycle 5 and two extra weeks for cycle 6.

One big thing before your surgery is to make sure you see an ostomy nurse. She will educate you on ostomy care and mark you for surgery. You should also see her several times after surgery to make sure you have the right pouching system for your body and stoma. It took me several visits before we got the right set up for me. It was amazing. I had been having pain and itching since the first day due to leaks, then we finally got it right and I could not feel anything. Up until that point, I thought pain and itching were just part of having an ileostomy.

Keep asking questions. Knowledge is power!

Regarding working and infusions. I have had two so far and I worked from home in the afternoon of both. It's challenging though because of the cold sensitivity and other side-effects.

I have gone into the office the next day after both infusions but the second time was harder and I did nap at my desk for a while in the afternoon. I find that I am more tired after the second infusion and it's gotten quite difficult to get in long walks. I can imagine that a physical job like yours would be far more difficult. I'm also more careful when I drive as I have to manage the cold sensitivity issues for a week. I was out in 16 degree weather this morning (I have been out in far colder weather and it's rough), and had some cold sensitivity problems but your climate is a lot milder than mine is so it may be a lot more manageable for you.

One issue is that I can't eat or drink anything cold and this is frustrating. I basically have to leave things at room temperature or cook. It means more effort overall in eating and drinking and you need to keep your fluids up while on chemo to help flush them out.

I have started having my treatments on Wednesdays. I take Wednesday off, then work from home Thursday and Friday. Thankfully I have the flexibility to do this. I use the weekend to recover, then back to the office on Monday. If I had a more physical job I'm not sure if I could go back so soon. The last treatment I was extremely fatigued on days three and four. I took several naps and had to go to bed early.

heiders33 wrote:I have started having my treatments on Wednesdays. I take Wednesday off, then work from home Thursday and Friday. Thankfully I have the flexibility to do this. I use the weekend to recover, then back to the office on Monday. If I had a more physical job I'm not sure if I could go back so soon. The last treatment I was extremely fatigued on days three and four. I took several naps and had to go to bed early.

Mine are on Wednesday as well and I think it works for the best so that I can recover on the weekends. It feels like there's a bit of a delayed reaction on the nausea.

Thank you all for the information. My surgeon gave me 6 weeks, oncologist recommends 12. I think he is concerned about the physical nature of my job and the little cute germy kiddos I spend my days with. I guess we wait and see. I. Meet the nurse on Friday to decide about where my stoma will be and to get some teaching about care post surgery. I will ask about the supplies, materials you've all mentioned. I will also check with my local hospital and see if they have anyone that can be a resource, 30 minutes beat a drive to Stanford. I will also ask the home health nurses who work next door to our clinic.
Susan

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