Newbie went thru surgery

sammer4u

Hi! I am new to this network, and read a few threads with interest. My name is Scott and I am 41. I went to the emergency room November 3 in severe pain. While in the ER they hooked me up to IV and gave me morphine for the pain I was in. They sent me to get a CAT scan and found a blockage in my colon. The surgeon on call reviewed it and determined that I should be admitted. I talked to the surgeon the next day and she wanted to schedule for for a short scope (not the colonoscopy) and did so at 3 in the afternoon. She was only able to get so far before hitting the blockage and said that surgery was next. I went into surgery at 8:00 pm and got out to recovery at 12:30 am. She removed the tumor, 18 lymph nodes, and a foot of my colon. After I came to a bit I was informed that I had a colostomy bag and would be on me for 3-6 months. Never thinking this would be me, and that I would never be able to deal with all that needs to be dealt with of this "bag" I did not know what to think. I was released from the hospital the following Tuesday. I found out the following Saturday that the tumor and 7 of the 18 lymph nodes were cancerous. Chemo was the next step I was informed.

As of Tuesday I still do not know what I am up against. I visited with the Oncologist at my local Cancer facility. He is concerned about a couple of spots on my liver and has ordered a PET scan which I do Tuesday. Not sure what this is going to involve, but I have been told not to eat after 2 am. I was told that I will be required to lay still for about an hour. Not sure if I just go in or they have to give me something or??

Still a little apprehensive on the next few steps, but after my consultation with the RN at the cancer facility sounds like I will have a fanny bag type of contraption that will pump Chemo into me. I will use that for two days every two weeks for 6 months. Side affects that she has been told by other patients are that they get cold, cold items are too cold (such as soda, ice cream) and that food will not have any taste.

Just a short introduction, and would be curious to hear any info on someone with similar experiences. I am not sure what to expect with the Chemo, or for follow up visits after teh treatment time of 6 months. I do not know what to expect for the colostomy reversal or the insertion of a port in my chest for the chemo and ease of blood work process.

My main thought at this point is that all I care about is that the cancer is out of me. I have to deal with some minor inconveniences for the next 6 months, and the inconveniences of a colostomy bag. All in all the bag is not the worlds worse thing. I have come to terms with it and am pretty good with it. I am using the Conva Tec brand products, and I still do not like to switch over the wafers. Looking for advice on that, currently do it after a shower but it is still a long issue.

Any insight or helpful future-casting would be greatly appreciated. Love the site and hope to gain more knowledge from here. Sorry for the long first post, but wanted to get all my info out there.. All I can say.. is if you feel strange and have cramps in the stomach area... get it checked out, get a scope of some sort or even a CAT scan. I went from one doctor who said it was only Hemroids to another that thought it was IBS. And it took me to be in severe pain and so out of it to get the proper diagnosis.

laurettas

Welcome Scott
I can't answer all of your questions because my husband doesn't have a colostomy but I can give you a little info about PET scans since he just had one. For 24 hours before the scan you are to eat no carbs--mostly no starches since you can have some veggies still. They also don't want you to exercise either because they want your healthy cells to be at rest as much as possible. What they are doing is giving you radioactive glucose into your blood, waiting for an hour and then taking a scan to see where the glucose collects. Cancer cells eat more glucose than healthy ones so they will "glow" on the scan. It took a few days before we had the results from the scan.

The port in the chest is wonderful. My husband had his installed at the same time as his colon surgery. If it is the same as my husband's the whole thing is under the skin so you have no maintenance to do at all and they can just insert a needle into it when they give you a treatment and you don't have to go through them finding a vein in your arm, and all that can entail.

Chemo effects vary so much it is really difficult to give you a scenario that you can trust to be your experience. My husband tolerates chemo very well, no vomiting or diarrhea, blood levels stay up, can get out and do things almost every day, etc. Some people have more side effects that give them a rough time. It's just one of those things that you have to wait and see how your body responds. There are lots of things to help with the side effects and oncologists usually have someone you can talk with anytime that can help you if you need it.

We all learn that we have to take each day as it comes and deal with whatever that day brings. Anticipating what is in the future can tend to drive you crazy and raise your stress level, so it's easier to just not think about what might be coming! There are lots of people here that can answer your basic questions and give tips on handling various aspects of the process, so don't be shy about asking for help.

Again, welcome!

toddi1973

Sorry but you're not alone
Your story reads a lot like mine exept it was end of August this year.
I had the same blockage, the same ER experience, same 'bag' and the same 'positive' result of the blockage containing malign pieces. The only difference is they couldn't find anything in the Lymph nodes. But even that doesn't mean too much as they then spotted two lesions on the liver. These lesions were cleared as 'cysts' from an MRI scan. I would ask your Doc if a PET scan is the right thing at this time as your scar tissue will probably illuminate the PET scan and show false positives or misreadings.
I am in the third round (of 12) of the FOLFOX chemo and th PET scan has been scheduled for after the chemo is done to make sure everything else that was cut inside of me had a chance to heal.
I am 'only' three months ahead of you into this marathon let me know if I can help in any way.
Also, look at the stoma belt from stomatec.com . It helped me a lot with wearing regular clothes and being 'normal'

Toddi1973

sammer4u

laurettas said:

Welcome Scott
I can't answer all of your questions because my husband doesn't have a colostomy but I can give you a little info about PET scans since he just had one. For 24 hours before the scan you are to eat no carbs--mostly no starches since you can have some veggies still. They also don't want you to exercise either because they want your healthy cells to be at rest as much as possible. What they are doing is giving you radioactive glucose into your blood, waiting for an hour and then taking a scan to see where the glucose collects. Cancer cells eat more glucose than healthy ones so they will "glow" on the scan. It took a few days before we had the results from the scan.

The port in the chest is wonderful. My husband had his installed at the same time as his colon surgery. If it is the same as my husband's the whole thing is under the skin so you have no maintenance to do at all and they can just insert a needle into it when they give you a treatment and you don't have to go through them finding a vein in your arm, and all that can entail.

Chemo effects vary so much it is really difficult to give you a scenario that you can trust to be your experience. My husband tolerates chemo very well, no vomiting or diarrhea, blood levels stay up, can get out and do things almost every day, etc. Some people have more side effects that give them a rough time. It's just one of those things that you have to wait and see how your body responds. There are lots of things to help with the side effects and oncologists usually have someone you can talk with anytime that can help you if you need it.

We all learn that we have to take each day as it comes and deal with whatever that day brings. Anticipating what is in the future can tend to drive you crazy and raise your stress level, so it's easier to just not think about what might be coming! There are lots of people here that can answer your basic questions and give tips on handling various aspects of the process, so don't be shy about asking for help.

Again, welcome!

Thanks for the info, much
Thanks for the info, much appreciated! Does the port need any special attention, such as covering in the shower or is it under the skin completely?

sammer4u

toddi1973 said:

Sorry but you're not alone
Your story reads a lot like mine exept it was end of August this year.
I had the same blockage, the same ER experience, same 'bag' and the same 'positive' result of the blockage containing malign pieces. The only difference is they couldn't find anything in the Lymph nodes. But even that doesn't mean too much as they then spotted two lesions on the liver. These lesions were cleared as 'cysts' from an MRI scan. I would ask your Doc if a PET scan is the right thing at this time as your scar tissue will probably illuminate the PET scan and show false positives or misreadings.
I am in the third round (of 12) of the FOLFOX chemo and th PET scan has been scheduled for after the chemo is done to make sure everything else that was cut inside of me had a chance to heal.
I am 'only' three months ahead of you into this marathon let me know if I can help in any way.
Also, look at the stoma belt from stomatec.com . It helped me a lot with wearing regular clothes and being 'normal'

Toddi1973

I appreciate your info as
I appreciate your info as well... Thanks for the stomatec link. I have gone out and bought bigger pants in the waste line and have been wearing suspenders. I normally wear 31 waste, but got 34's... I am concerned about compressing the stoma. Is your stoma reversible? If so when are you looking at and did they tell you how they were going about it? As far as the PET scan, they were figuring a month after the surgery was when they wanted to do it.. so I am at a month and a couple of days.... See what happens. Thanks again for the encouragement and help! You still have issues changing the wafer? I guess what I am asking is, is it still sensitive to change it. I have had to shave a little bit to make sure most hair is out of the way, but it still takes fairly long to change out (about 45 minutes however I do let it air out for about 5 minutes.)

toddi1973

sammer4u said:

I appreciate your info as
I appreciate your info as well... Thanks for the stomatec link. I have gone out and bought bigger pants in the waste line and have been wearing suspenders. I normally wear 31 waste, but got 34's... I am concerned about compressing the stoma. Is your stoma reversible? If so when are you looking at and did they tell you how they were going about it? As far as the PET scan, they were figuring a month after the surgery was when they wanted to do it.. so I am at a month and a couple of days.... See what happens. Thanks again for the encouragement and help! You still have issues changing the wafer? I guess what I am asking is, is it still sensitive to change it. I have had to shave a little bit to make sure most hair is out of the way, but it still takes fairly long to change out (about 45 minutes however I do let it air out for about 5 minutes.)

We don't know about my
We don't know about my 'number 2' yet whether it's reversible or not. It's a 50/50 chance at this point. But I honestly don't care too much about it. Prime focus is to get the 'all clear' after the chemo (HOPEHOPEHOPE). And then I will take it from there.
I can tell you that I struggled to first 6 to 8 weeks with the Wafers. I had lost so much weight that I couldn't properly attach it, there were 'valleys and hills' in my belly that would make it a nightmare. I had to change every 2 days and then still had 'accidents'.
However. Gaining a little weight and a little confidence helped with the wafers. I encourage you to look at the 'stomahesive paste' from convatec and more important the Cavillon Spray from 3M to protect your skin. The sensitivity that I had was from unprotected skin and the powder/paste and the Cavillon spray take care of that.
Also, I use a blowdryer on medium and very careful after the shower to dry the skin and then again to dry the cavillon spray completely before I put the new wafer on. Whole 'process' takes about 30 minutes now. Another thing. You mentioned shaving. One of the best advice that I got was to put a shotglass over the stome while shaving. Makes it a lot easier and safer to not cut into your stoma.

One last thing (and that's probably just me), what is worst for me is the smell from the old wafer. It makes me more nautious then my chemo so far. As soon as it's off, it goes in a Ziplock bag. Found that very helpful too.

T.

toddi1973

sammer4u said:

Thanks for the info, much
Thanks for the info, much appreciated! Does the port need any special attention, such as covering in the shower or is it under the skin completely?

Port
I was implanted with a port as well.
There is really no maintenance or worries for you as it's under your skin.
It's really a great thing to have, I was very sceptical in the beginning but it's all good.

Infusions are a lot easier with it as I can see every time I go t the infusion center.

T.

steveandnat

Welcome to the group
Sorry we all have to meet this way...who would have thought!!.. Sounds like your on the right track with everything. The port is great because it make the infusions so much easier. No problem taking a shower with it or anything. I never had surgery but have been getting chemo every two weeks since Jun 09. There are lot's of side effects that people get but not everyone is the same. A real common one is the numbness in the feet and hands from the chemo. Make sure your onc gives you enough prenausea meds before you get your chemo so you don't have too bad of a reaction. Emend has been a good anti nausea medicine for me. Sounds like you have a good attitude going into everything...hope you have a good support group at home. We all are here too. Keep us posted. Praying for the best.
Jeff

buckeye2

I try to offer those new to
I try to offer those new to the Board the two quotes that I learned from the Board that have helped me.

"This is a marathon,not a sprint".
This has helped me realize to buckle down for the long haul. I can't cry everyday and put our families life on hold. We have to keep living our life as close to normal as possible.


"Feed the faith. Starve the fear".

I think the worst symptom associated with these disease may be what it does to your thoughts. They can be controlled with some effort. I try to shove the bad ones down as far as I can.

Stay on the Boards. The people here are very knowledgeable. Either only smart people get colon cancer or only smart colon cancer patients post. T
Regardless, the information will help you and the encouragement will "feed the faith".

Lisa

tommycat

I had a ilestomy for a year
I had a ilestomy for a year and learned some tricks along the way.
My shower routine:
1. There are times when your stoma isn't that active. When you figure out that cycle or how to manipulate it, showering will be easier. For me, it meant nothing caffinated to drink in the a.m. until AFTER my shower.
2. I would lay everything out on the counter: The peeled wafer attached to the larger piece, the bag, the powder and some paper towels.
3. Putting some more paper towels outside the shower door, I would start the shower, peel off the old stuff, quickly put it in a ziploc, then get in the shower.
4. After showering, I would clutch the paper towels to my stoma as I dried and put on a towel. Sometimes would lightly blowdry the stoma area on the cool setting.
5. Immediately put on everything that was set out. Also sometimes I would put a preheated heating pad on top of the whole contraption to help the adhesive melt and seal.
Voila---done! Through trial and error, I got this whole process down I swear I could do it in my sleep.
You will love having the port. It is a real medical blessing. Toward the end, I stopped using the lidocaine before the IV infusion as I'd rather only feel one stick.
Good luck to you! and welcome
Your Friend in California~