Mikenh and Surgery

airborne72 said:

Humble Pie

Changing the wafer is my greatest challenge and dread.  I am tempted to just coordinate and pay for a home health care nurse to do it for me, but that is escapism and silly.  I can do this - not well, but I can do this.

I finally had some minor leakage and a small area of my skin became irritated.  Obviously, I need to change more often and do a better job of it.

I can identify with your concern over wasting a wafer.  Insurance will only pay for 20 per month and the turn around time for resupply is slow and out of my control.  I do not like that situation, so I have located local outlets where I can pay out of pocket for additional supplies.

If I could have one do-over, it would be to have the WOC nurse conduct another tutorial AND have me do it all while she observed and critiqued my performance.

Jim

Thanks, Jim. Nice to know that it is challenging, especially the first time on my own. I considered paying for a service as well.

The thing is the nurse at the hospital had similar problems. My problem is that I have a very active stoma. I didn't eat for about 10 hours before trying the change but I did drink Benefiber and water and maybe that was a mistake.

My other main problems is that I tried to do this from my notes. Notes are great to have but they are far more useful when turned into directions. And that's what I need to do. Today. Notes are rough, aren't always in sequence and don't have a list of supplies that you need and what you need for each step. I thought that I was reasonably prepared for supplies, and I was, but I removed the wafer seal before putting the bag on and I wasn't able to recover. The active stoma was a problem but indecision and wasted time on steps allowed it to keep erupting and I had to keep cleaning it.

I read in the Ostomy directions that it's not a good idea to stockpile Ostomy supplies. I'm getting supplies through the VNA company and they said that I should get them today but I don't know if that will happen. If they can get them to me in a timely manner, then I won't worry so much as I won't be using anywhere near 20 a month and I should be able to build up a stockpile. Hey, if I've learned to empty my bag, give myself an injection a day, I should be able to learn how to change a bag, right?

I still have to clean up a bunch of things in the bathroom. Also plugged the toilet and generated a lot of paper waste. And need to rinse out facecloths, buy a gallon of liquid bleach and do the laundry. Though doing the laundry will mean directing the doing of the laundry.

One last thing: how do you get the barrier paste off your fingers?

airborne72 said:

Co-misery

That was one of my mistakes as well.  I put too much paste around the opening in the wafer and then tried to even it out with my gloved finger.  What a mess.  So, I decided to use less paste and if I need to spread it then I use a Q-tip instead of my finger.

My stoma is inactive early in the morning but that is quite a wake-up call.  Quick, get up and change your wafer and bag because your involuntary muscles in your intestines are resting.  Who's in charge here after all?  Your stoma!!

Gloves? I washed my hands for sure and watched a video and the person didn't use gloves. Were those in your directions? That would make it a bit harder I think.

The nurse that changed it on Friday held the tube perpendicular to the wafer and squeezed it out and used the top of the cap to keep the layer flat and thin. My change apparently worked as I haven't detected any leaks and I don't feel any pain. I think that I used excess paste though. I should probably spend some time in the Ostomy forums. I need to call the VNA folks. The lady that came Saturday said that she'd place the order Monday for delivery today. I suspect that she was supposed to tell someone else to do it as she's on vacation this week. The nurse that came Tuesday didn't know anything about it.

How's your calories stuff going? Are you getting enough these days?

Cindy225 said:

LOL!

Mike and Jim you are both a riot with the ileostomy arts and crafts project changing the bag!   I so get it! You should ask your home wound care nurse to do a step by step change with you and write it down. Even take pictures! Have lots of paper towels on the floor and put  tissues on the stoma when changing it. Over the next month the stoma should be what it will be and you can order pre-cut wafers which saves so much time. Do not touch the paste! Use the tip of the scissors to manipulate the paste. A bit of extra paste helps protect the skin against irritation.  I also used a portable stand up mirror on the sink to eyeball everything before applying the wafer with the paste. It gets better but every three days comes up quickly so mark it on your calendar. 

Cindy  

Cindy:

There is both an art and science to managing an ileostomy and I have yet to master either.  Some things I can do naturally but this is just not one.  Because I am all thumbs with this task, I soon make a mess and get frustrated.  

On Friday I have another follow-up appointment with my surgeon (30 days post surgery).  He will remove stitches (?) I believe but also remove the small, rubber tube that functions as a bridge in my ileostomy.  Once that is extracted it will be easier to place a wafer over my ostomy.  However, doing so will need to be done at his office and either I will have to do it or a nurse will do so.  Sure hope WE don't make a mess.  How embarassing that could be.

Mike:

I realized that I did not answer your question regarding my weight, BMI and calorie intake.  Thanks to Marinol my appetite is gaining intensity, but mostly for sweets.  I was successful in eliminating soda's and sweets from my diet decades ago but now I am allowing them back in to stop this weight loss.  It's not that bad anyway because the volume of my intake is minimal.

Another good eating habit that I must change is consuming smaller quantities more frequently through the day.  I never ate any breakfast other than juice and coffee and I never ate between meals.  I am in the process of changing that frequency to accomodate the amount of nutrition my digestive system can obtain with this ileostomy.

Prior to this situation, 50% of my daily diet was a fresh, green salad.  My favorite vegetable (fruit?) is tomatoes but now they can only be eaten with great care.  No celery or raw carrots, etc.  It's enough to make a grown man cry.  I have had to delete my favorite, and most healthy, meal because of my ileostomy. 

Also, I previously ate supper around 8 p.m.  Now I have learned that is too late with an ileostomy, unless you want to get up through the night burping the bag and emptying it.  This ileostomy is forcing me to change my lifestyle immediately.  I have no choice.

My low point on weight was 131 pounds (sorry Tru, I can't convert that to stones) on 23 October.  It is now back up to 134 thanks to a chocolate milk shake from Sonic each evening and a bottle of Ensure each afternoon.  Before I got involved with rectal cancer my normal weight was approximately 145.

I am scheduled to begin my initial infusion of FOLFOX6 next Wednesday.  We'll see what happens to my appetite and BMI when that stressor is applied.

Jim

I took a walk at 8:00 AM and the temperature outside was 27 degrees. I had on a tech tee, tech long-sleeve and a PowerStretch Hoodie with Balacava, and a down coat over those. I wore the Balacava over a running beanie. Long underwear and a warmup and wool socks and Marmot snow gloves completed the outfit and I was warm everywhere except for my hands. I think that fleece gloves with running glove liners would have been a better choice. 0.6 miles on the walk and I took it really slow. I’m starting to feel that I might be able to drive by the weekend and that the staples are okay to come out next week.

One thing that I've wanted to do for the last ten years is read through Campbell's Biology. This is a first-year university text and also a common Advanced Placement text and we have two copies because our son studied it in AP and in college. The main problem is that the textbooks weigh more than I'm supposed to lift or carry. Same with the Genetics book that's somewhere in our home library. I could get a Kindle version but I think that it's $140 and I have a hard time buying a third copy of the same book (though it would be a newer edition). I suppose I could get someone else to set it up at a desk so that I only have to turn the pages. This is kind of what I mean by there's so much I want to do and so little time to do it. Well, I do have some time now.

Ideas for papers:

* It would be interesting to write a paper to make the case for Genomic Tumor Testing on Colorectal biopsies for Rectal Cancer or tumors for Colon Cancer. The case could be made for patients with KRAS so that they shouldn't use Anti-EGFR drugs and BRAF so that oncologists know that there is time pressure and that they're dealing with an aggressive cancer that may not respond well to traditional front-line chemotherapy.

* It would also be interesting to write a paper describing all of the known mutations of Colorectal Cancer, their prevalence, survival rates, response to front-line Colorectal Cancer chemotherapy and targeted therapies. Depth would be a variable for the paper. It could go into the technical details of how the mutation and variants work or it could just by upper-level numbers. Or there could be two papers overall, one with statistics and the other describing the mechanisms of the know Colorectal Cancer mutations.

Out of curiouity, do you folks know your cancer mutation and variant? Mine is KRAS G12D.

Mikenh, were you given pain medication to take home?  While in the hospital they had me on an IV of hydromorphone along with some other stuff.  It made that whole area numb.  I was numb from about the bottom of the rib cage to the knee.  They tested it with ice to see if I could feel it or not.  That has me wondering, how was I able to walk?  It made getting the heperine shots a walk in the park.  I was told then it would hurt and feel hot going in. I didn't feel a thing.  I was nervous about the complete absense of sensation because, this is my own thoughts, if we're feeeling pain that's the body's way of telling us to stop doing what we're doing. 

 I was given 2 prescriptions, one was  2mg hydromophone pills.  So far I've taken 5 in total.  First two were Monday evening after I got back because the incision was hurting a lot,  The second day it tapered off a little bit but still hurt so I ended up taking 2 more.  Yesterday none and today is one.  Last couple days the physical pain wasnt so bad.

 I think I'm going to ask about the genetic testing because I haven't heard a peep about that even though it was mentioned early on and nothing on post op pathology either.  

I don't envy you ileostomy battles as my colostomy has been pretty simple to deal with.  I use lots of paper towels though.  Much cleaner than dealing with laundry.  I also almost always change the bag sitting up in bed.  And most insurance covers disposable bags whichnalso eliminate the messiness of emptying.  You two also have the upside of knowing it's temporary.  Hope your reversals come soon.  

I invested in a slow masticating juicer.  Easy way to get nutrients from spinach, carrots, pineapple, etc.  And if I make smoothies with mt Nutribullet I strain it to eliminate small berry seeds that may not have been pulverized.  Medical marijuana was the only thing that gave me an appetite during treatment.

I have the KRAS Gly12Ala mutation.  And no Lynch.  Gonna make follow up chemo limited.  Although the Onc is sending my tumor to a Foundation that may offer a clinical trial.

Off to get intravenous Vitamin C and Ozone today.  I'll do this twice a week through January.  And whether it stalls the tumors or not, I feel fantastic for days afterward, building my strength and stamina.

Mike, would you be writing these papers?  Please keep us posted!  Thanks.

BRHMichigan said:

Ostomies & papers

I don't envy you ileostomy battles as my colostomy has been pretty simple to deal with.  I use lots of paper towels though.  Much cleaner than dealing with laundry.  I also almost always change the bag sitting up in bed.  And most insurance covers disposable bags whichnalso eliminate the messiness of emptying.  You two also have the upside of knowing it's temporary.  Hope your reversals come soon.  

I invested in a slow masticating juicer.  Easy way to get nutrients from spinach, carrots, pineapple, etc.  And if I make smoothies with mt Nutribullet I strain it to eliminate small berry seeds that may not have been pulverized.  Medical marijuana was the only thing that gave me an appetite during treatment.

I have the KRAS Gly12Ala mutation.  And no Lynch.  Gonna make follow up chemo limited.  Although the Onc is sending my tumor to a Foundation that may offer a clinical trial.

Off to get intravenous Vitamin C and Ozone today.  I'll do this twice a week through January.  And whether it stalls the tumors or not, I feel fantastic for days afterward, building my strength and stamina.

Mike, would you be writing these papers?  Please keep us posted!  Thanks.

So you have G12A and I have G12D. Mine is where a Glycine is replaced by Aspartic Acid and yours is where a Glycine is replaced by an Alanine. So our tumors are related.

https://targetedcancercare.massgeneral.org/My-Trial-Guide/Diseases/Colorectal-Cancer/KRAS/G12A-(c-35G-C).aspx

My wife has a Ninja 5000 juicer and she's offered to do smoothies. I may ask her to do something with Arugala which is one of my favorite leafies. I'll be annoyed, though, if bits of green leaf show up in the stoma bag. That's what happened with the cashews. I'm not going to buy and eat food if it isn't used by the body.

I would try to write the papers but get them published under my son's name or his boss if he'd agree to it.

  I've sent an e-mail to the surgeon about the testing. I hope it's not too late but I would think they'd want to know what variant of cancer it is for the follow up chemo.  The genetic testing is something I really want to do.   I don't care if insurance pays for it or not.  I talked to a woman in the blood lab a month or so back who confided in me that she wishes her husband did it when he had colon cancer.  He ended up dying of three other cancers that showed up 10 years later.  He was about my age when he contracted colon cancer and it was also stage 3 like mine and similarly situated tumour location.  I don't know what it cost but living longer takes priority over anything else. 

 One thing I was told by a doctor there who also explained why there is such a huge problem with oxicotin addiction is about chemo sessions. She said there is a good chance that there will be more chemo sessions beyond just the one follow up. I guess it depends on the pathology which even then is limited. They only pull from one area and if one lymph node has something that means it could have gone anywhere. That explains recurrence in odd places that many have experienced.   

  She told me pharma reps tell doctors to prescribe higher doses of oxicotin if patients don't get the duration of relief they expect.  Oxy was marketed as a 12 hour pain releif when in fact it isn't.  Raising the dose only increases the middle of the bell curve in pain releif beyond just killing the pain and creating a sensaton of being high and then addiction follows.  Pharma reps are no better than any other sales person.  They'll lie for a buck.

Darcher:

Some of what you just posted illicited a response from me.  This is not intended as a personal response to you, but rather to the subject.  I wrote, rewrote, and rewrote this statement several times to ensure that it is not personally offensive.  Bear with me.

I have been under the care of a pain management physician for almost 4 years.  During that time I have subscribed to all modalities of pain intervention with significant out-of-pocket cost, expenditure of time, and even pain associated with the treatments themselves.  For example, if you have never had an ESI (epidural steriod injection) then try one for fun.  I am also bound by a legal contract that I signed, stipulating my behavior, etc. in regards to lifestyle and prescriptions.  There are specific rules of conduct and consequences for violating those rules.

Being a patient whose pain is managed is more complex than what the major news reporting entities are portraying.  They are publicizing the sensational issues (yellow journalism) without sharing the full story.  Consequently, anytime the word opioid is mentioned the public is now conjuring a mental image of an indigent street bum who is strung out on oxycontin.  That is not correct.

What I am trying to convey in my post is the fact that pain management is a formal and highly regulated medical regimen designed to manage chronic pain.  The key word in that sentence is "manage" the pain - not the elimination of the pain.  I have never felt high or euphoric while taking opioid medications.  What I have felt is the control of pain to the extent that I have been enabled to continue to work publically and to contribute to society.  Now, as a direct result of the sensationalistic journalism, I am forced to endure even more hassle as a pain management patient.  That is the primary reason why I am sensitive to statements about opioids and addiction. 

There is a distinct difference between addiction and dependence.  Aversion to incorporate a pharmaceutical into medical intervention techniques because of misinformation is unfortunate.  Patients are suffering needlessly. 

Ok, that's all for now.  I just felt the need to express some of my frustration with this situation.

Jim