The Colon Club

Thanks guys,
Susan I locked myself out when I got a new phone but was still reading all post,,, but I'm n again now
Surgery went excellent,,,, I've an amazing surgeon
Had a TATME sith coloanal anastomosis with coloplasty
also soo no external scars apart from laporscopy scars,, so recovery was pretty easy TBH,,, still waiting on immunohistochemistry but it's changed from moderately differencated to poorly, from origional biopsy
( Only had a chance to half read my report) HOLY GRAIL!!
But apart from that all good here,,, will be better when this is over,,,,
Don't know how u people manage the illeostomy n the heat????
I went to Spain the weekend before my chemo and had an awfully trial ( bag sliding off and leaks) not going back until it's reversed

Fair play Mike 9 days with a flange
I can't get past 2 days and I've everything lol
Paste,
Stickers
Powder
Seals etc,,,,,
Adele

I add two-inch wide Hypafix tape around the wafer tape and also use a belt that attaches to the wafer. I won't run without the added security of the stuff to hold the wafer in place.

Everyone figures out what works for them.

Michael
Brava tape from coloplast is brilliant,,,,
It's semi circle so fits perfectly
Not sure Uve tried it, if not deffinatly do,,,, were Lucky in Ireland because they will give u anything y need to get through Ur chemo or ostomy process,
I know u lot are limited with Ur insurance companies.
Adele

https://www.amazon.co.uk/gp/aw/d/B00U37 ... rava+tape#

Eleda wrote:Michael
Brava tape from coloplast is brilliant,,,,
It's semi circle so fits perfectly
Not sure Uve tried it, if not deffinatly do,,,, were Lucky in Ireland because they will give u anything y need to get through Ur chemo or ostomy process,
I know u lot are limited with Ur insurance companies.
Adele

I have samples but haven't tried them. I'm using Convex wafers and I suspect that the shape helps them stay in and prevent leaks and it might try to do the same thing as the barrier pieces.

I have about 13 of the current type and it's almost as many days to the reversal. I also have other types of wafers and pouches, probably about 60 of them. So I could change more frequently.

Caat55 wrote:Adele,
I haven't seen you post in a while, glad to hear you made it through first round.

I also had, have the rock in my throat which doesn't go away, a fan or cool temps make it worse. My tongue and roof of mouth feel funny as well. I can only tolerate warm liquids. My feet and hands are intolerant of cold, I wear garden gloves, New of course, to hold veggies, eggs when preparing meals? Sadly, each infusion is a little more challenging. I went Thursday, pooped out Saturday and Monday back to work. This final time, sick immediately and for about 7 days.

Started an strengthening program for pelvic work, abs and glutes yesterday. A 12 week course to prepare for reversal. I have to schedule a barium enema according to surgeon.

I can't wait to be able to tolerate cool, want to go kayaking and enjoy some time camping. I notice I don't heal well if nicked, bumped or mosquito bit.

Susan

I need to get to work on those exercises - reversal is in two weeks!

I started with Yoga this morning. Will do some more yoga in my office and then do machines tonight after walking. Also did some barbell squats this morning. I'll try to get back to doing deadlifts.

My husband likes me to change his wafer every weekend. So we take it off so he can shower without it once a week. We use to have problems with leaking and the edges peeling, the wafer sliding around but I've gotten it to stay. It would stay longer, but he likes to replace it every week. I have to put the wafer on because there is no way he would be able to. I use a thin layer of paste on the inner edge only. I was also given skin tac that I use on the skin the whole area the wafer and extenders are. I tried the hypafix on the edge of the wafer, but with his skin it wouldn't stick long. We use the adapt barrier extenders from Hollister. After I put the wafer on, but before the extenders I put my hand (with a glove on, cuz the bag is not on yet) I put my hand over it to kind of heat his skin up and it helps the paste and the wafer stick to his skin better. Then I put the extenders on and put my hands over that also.

Now he does shower as much as he wants. The only days he doesn't are his chemo days and the 48 hours he wears the pump. If he will have to change his bag when he's done he will just shower and get it wet and then change it when he gets out. If he doesn't I got a shower cap that covers the bag and I clip it in the back. A little water gets in there so just the tip of his bag is usually wet. He then uses a hair dryer on low heat and dries his wafer (it also helps the adhesive restick).

Our problem is when we go to take the wafer off, its sticking so I it kinda pulls his hairs that have grown and his skin. I try my hardest for it not to hurt. But I know it does.

NHMike wrote:

Caat55 wrote:

Susan

I need to get to work on those exercises - reversal is in two weeks!

I started with Yoga this morning. Will do some more yoga in my office and then do machines tonight after walking. Also did some barbell squats this morning. I'll try to get back to doing deadlifts.

Try something called a goblet squat. Hold the weight near your chest like you would a glass of wine, elbows in at sides and do squat. Great core exercise. Pelvic tilts on a therapy ball also are helping with lower abs, pelvic floor.

S

tminor5 wrote:My husband likes me to change his wafer every weekend. So we take it off so he can shower without it once a week. We use to have problems with leaking and the edges peeling, the wafer sliding around but I've gotten it to stay. It would stay longer, but he likes to replace it every week. I have to put the wafer on because there is no way he would be able to. I use a thin layer of paste on the inner edge only. I was also given skin tac that I use on the skin the whole area the wafer and extenders are. I tried the hypafix on the edge of the wafer, but with his skin it wouldn't stick long. We use the adapt barrier extenders from Hollister. After I put the wafer on, but before the extenders I put my hand (with a glove on, cuz the bag is not on yet) I put my hand over it to kind of heat his skin up and it helps the paste and the wafer stick to his skin better. Then I put the extenders on and put my hands over that also.

Now he does shower as much as he wants. The only days he doesn't are his chemo days and the 48 hours he wears the pump. If he will have to change his bag when he's done he will just shower and get it wet and then change it when he gets out. If he doesn't I got a shower cap that covers the bag and I clip it in the back. A little water gets in there so just the tip of his bag is usually wet. He then uses a hair dryer on low heat and dries his wafer (it also helps the adhesive restick).

Our problem is when we go to take the wafer off, its sticking so I it kinda pulls his hairs that have grown and his skin. I try my hardest for it not to hurt. But I know it does.

It feels so good to shower without anything attached to your body. I just have everything cut, ready to go and sitting on toilet next to shower put myself back together before I get out of the tub.

S

Caat55 wrote:

NHMike wrote:

Caat55 wrote:How do you know it worked? Did you do any followup PET scan, MRI? Oncologist said just come back in 6 months.
S

This is the surveillance schedule that my oncologist at Dana Farber recommended:

Three months after you complete the chemo, we will perform a CT scan to make sure you are disease free and then plan for ileostomy reversal and port removal. I or my NP will see you every 3 months for two years and every 6 months for 3 years thereafter. [surgeon] will perform a colonoscopy 6-9 months after ileostomy reversal and usually yearly thereafter for at least two years. CT scans annually for 3 years.

I had a CT scan this week because my CEA accelerated above normal levels but my oncologist at Dana Farber would have ordered one three months after the end of chemo. The schedule is off from his suggestion because the surgeon said that she could do the reversal one month after the end of chemo. I am going to have the Barium Enema (that doesn't use Barium) and I assume that that is some kind of scan as well.

You might ask your oncologist what his or her surveillance protocol is.

Thanks MIke, see you again in six months just didn't sound right. I will email my surgeon and second opinion oncologist to see what their protocal is as well.
S

Susan,

I'm just catching up here, I was out of town. Have you gotten an update on followup protocol yet? 6 months is way too long in my mind too. I get montly CEA and scanned 2-3 months depending on CEA which is unfortunately rising... possibly an indicator of progression which hasn't shown up on CT yet. I have an appointment next week with Stanford for another opinion and looking at possible clinical trials there. USC in Los Angeles is also on my radar. Stage IV diagnosis is keeping me on my toes! I hope you're enjoying warm weather and are able to do more every day!

Shana

The doctor ordered CEA. I have to go in to see him to get results. I am going in August when I go for port flush. I am going to ask for scan. Surgeon wants an all clear before I go in for reversal. I am going to see a local surgeon to see if she will repair some of the damage done to my bum during radiation, skin tags, as I am not using stuff done there, will definitely be less painful.

Tongue is feeling better. Made a beautiful cake I saw on British Baking Show which my friends said tasted yummy, I thought tasted bad. Actually made it twice and gave first to chickens but second tasted same, so shared with friends. Guess my taster is still off, looked so pretty though I wanted to taste it.Tolerated yogurt today. Air conditioning is necessary doe to heat up around 104 or 105 but painful.

Hope you had a good vacation, get answers from S tan ford, USC Shana.

Caat55 wrote:The doctor ordered CEA. I have to go in to see him to get results. I am going in August when I go for port flush. I am going to ask for scan. Surgeon wants an all clear before I go in for reversal. I am going to see a local surgeon to see if she will repair some of the damage done to my bum during radiation, skin tags, as I am not using stuff done there, will definitely be less painful.

Tongue is feeling better. Made a beautiful cake I saw on British Baking Show which my friends said tasted yummy, I thought tasted bad. Actually made it twice and gave first to chickens but second tasted same, so shared with friends. Guess my taster is still off, looked so pretty though I wanted to taste it.Tolerated yogurt today. Air conditioning is necessary doe to heat up around 104 or 105 but painful.

Hope you had a good vacation, get answers from S tan ford, USC Shana.

Sounds like a good plan, Susan

Sorry you couldn't enjoy your cake but I bet your tastebuds will start kicking in soon once the chemo is totally out of your body. It's hotter there than in Sonoma, I imagine it's a challenge with it being so hot yet AC hurts... crazy to even think about and I know that most people don't understand because it is such a bizarre side effect!

Vacation was great, met a lot of people dealing with CRC and felt proactive getting involved in fundraising with Climb for a Cure. It was exhausting but glad I did it. Hoping to get some ideas from next Dr opinion and remaining positive since I am thankfully feeling well right now.

Did I mention that my daughter is expecting TWINS in December? I have two new motivators to keep me going now

Shana wrote:
Sounds like a good plan, Susan

Sorry you couldn't enjoy your cake but I bet your tastebuds will start kicking in soon once the chemo is totally out of your body. It's hotter there than in Sonoma, I imagine it's a challenge with it being so hot yet AC hurts... crazy to even think about and I know that most people don't understand because it is such a bizarre side effect!

Vacation was great, met a lot of people dealing with CRC and felt proactive getting involved in fundraising with Climb for a Cure. It was exhausting but glad I did it. Hoping to get some ideas from next Dr opinion and remaining positive since I am thankfully feeling well right now.

Did I mention that my daughter is expecting TWINS in December? I have two new motivators to keep me going now

Congrats! That is new to keep you going, doubled. My husband is an identical twin, the two of them are off this weekend climbing some mountains. A solid connection right from the beginning, lucky you!

Funny things happen when you travel. The young TSA agent at Oakland Airport said "I am so glad to help you, can I ask you about your surgery?" Her mom was having half of your intestines removed, getting a stoma and she had lots of questions, never met anyone before. It was strange, but she was so sincere I answered her questions.

Caat55 wrote:

Shana wrote:
Sounds like a good plan, Susan

Sorry you couldn't enjoy your cake but I bet your tastebuds will start kicking in soon once the chemo is totally out of your body. It's hotter there than in Sonoma, I imagine it's a challenge with it being so hot yet AC hurts... crazy to even think about and I know that most people don't understand because it is such a bizarre side effect!

Vacation was great, met a lot of people dealing with CRC and felt proactive getting involved in fundraising with Climb for a Cure. It was exhausting but glad I did it. Hoping to get some ideas from next Dr opinion and remaining positive since I am thankfully feeling well right now.

Did I mention that my daughter is expecting TWINS in December? I have two new motivators to keep me going now

Congrats! That is new to keep you going, doubled. My husband is an identical twin, the two of them are off this weekend climbing some mountains. A solid connection right from the beginning, lucky you!

Funny things happen when you travel. The young TSA agent at Oakland Airport said "I am so glad to help you, can I ask you about your surgery?" Her mom was having half of your intestines removed, getting a stoma and she had lots of questions, never met anyone before. It was strange, but she was so sincere I answered her questions.

That's so cool that you were able to answer the TSA agent's questions, I am sure she appreciated it and she's going to be one of those agents who will be very respectful and understanding in future encounters with ostomy travelers. I had TSA precheck at SFO and Denver airprorts but got the random screening in Denver. The agent was great when I told her, she said it'll show up on the monitor and we just have to do a hand wipe. It was easy and discreet, no drama at all.

How great that your husband is a twin! I am very excited about first grandkids and can't wait to find out what they are. My daughter is 16 weeks tomorrow so might show up on ultrasound if they cooperate! She's hoping for at least one girl, she says she doesn't know what to do with boys!

Temperatures over 100 all last week, likely to hit 106 later in next few days. I am so happy to be past the new cold drinks stage of chemo. Had a glass of ice water, enjoyed ice tea and even ice cream. Yippee. Smoke from Yosemite fires is very bad, happy I can tolerate the AC again as well.
Susan

So I ended up with a trip to the hospital yesterday, woke up okay but as I was leaving for work didn't feel right, achy and stomach sore. Sat down on sofa for a while and woke up a half hour later burning up. Fever was 100.5 and quickly up to 102. Oncologist sent me to get blood work, UA and Chest xray. WBC was up but that's about it, as a precaution they put me on antibiotics. Fever hit 103 last night, now it is normal. My abdomen is still tender but otherwise I am okay.
If it's not one thing it's another.

Susan