Jim (airborne72) and Grace (lizard44)

Everyone:

I made it through and finally reached a place where I can comfortably compose a coherent message that summarizes my experience.  Whew!

My procedure was successful.  I ended up with a temporary bag.  The surgeon made that judgement call and I am OK with it.  The extenuating circumstances were scar tissue that resulted from my radical prostatectomy conducted in 2009 and the effects of the radiation on my rectal tissue.  Because of that he doubted that he could get a reconnection good enough to function without leakage.

However, I had difficulty with pain control.  My surgery began at 11:30.  I was not rolled out of recovery until about 7:30 because they could not get me comfortable.  None of that do I remember.  However, I do remember arriving in my room and experiencing severe pain for a while (30+ minutes) while they adjusted my dosage.  I was receiving meds through an IV and an epidural.  Part of this was because of my high dosage of pain medication that I have been on for years.

My day after surgery was worse because of miscommunication with the hospital pharmacy.  No one would authorize the oxycontin so I HURT for most of the day.  No excuse for this and I intend to aire my opinion as soon as I get out of here.  I went out of my way to thoroughly explain my pain management situation to all affected personnel, but what I feared might happen did happen.

Today I have been up and walking as it absolutely is very beneficial for recovery.  Painful at first but eventually you regain your stride and strethch out your groin area.  I have also been trained on the use and replacement of the ileostomy bags.  My diet has been increased one level above liquid and I may be discharged tomorrow, but I am not yet sure if I am ready.

So my midterm plan is to recover from this surgery and then begin the mop-up chemo regimen (6 two-week cycles of 5Fu received through a port and a bag that I will carry).  About a month after that, or whenever I am physically strong enough to withstand the surgery, I will undergo the ileostomy reversal.  It will be March or April by the time I am finished with all of this, barring any complications.

My mental state has warbled a little bit.  I guess I was enjoying the temporary honeymoon between the end of rad/chemo and the resection.  The acute pain associated with this procedure was another "cancer slap in the face" and reminder that CRC is a long term event.  In one form or another, the cancer will affect you and you must remain on guard with a positive attitude.  It is very tempting to slip into a pity party.

To answer the question about stents - mine were inserted and removed while I was under general anesthesia.  There was no need to leave them in.

I am glad to be back and I appreciate everyone's concern.  Hope my experience has shed some light on what others may soon be facing.

And one more thing, cancer still sucks.

Jim

You really are the strong one to be determined to walk and get home asap.  Your thoughts appear to be clear now; and hopefully they will send you home with some strong meds.  I had to speak to my surgeon today who will MAIL me a refill as they aren't allowed to phone them to the pharmacy.  Shame these opioids are so highly regulated when we need them.  You are fortunate to have your treatment planned so specifically.  Pot o'gold for you in Spring 2018.

Jim, you continue to inspire.  Prayers you will conquer this.  

Thinking of you all and remembering those early days after surgery... sending gentle hugs (not too hard).

Almost one year later and got through it all and you will too. 

Cindy  

So glad surgery is done for you and you are past that point.  Hope that you get home soon and your recovery is fast.  Look forward to seeing your post when you are able to get back on line.

Kim

airborne72 said:

Can't Sleep 3:30 am

Thanks ladies for your comments.  It is very reassuring to know that kindred spirits are sharing my journey.

Jim

Good to have you back Jim. Sorry about your pain issues but I hope that everything gets straightened out so that you can work on recovery. It sounds like the road is still pretty long for all of us. I'm just hoping that the potholes get smaller from here.

That's good news all went well for the most part.   I'm in that 'honeymoon' phase as you put it post chemo/rad and waiting on surgery.  Well said.  

lizard44 said:

Thanks for the kind thoughts

And to Trubrit for posting on my behalf.

The surgery on Tuesday went well.  The surgeoin said They took out about a foot of colon plus the rectum, anus, etc. and he got good clear margins. Preliminary pathology reports indicate that  the lymph nodes were  clear and none of them tested  positive for cancer.

Like Jim, I am hurting like the dickens. Most of the pain is in my backside, which makes sitting for any length of time extremely uncomfortable. I was discharged today, with a prescription for  Hydrocodon for pain with  my drainage tube still attached. I've already done one emptying of the colostomy bag  and one emptying of the drainage tube receptacle all by myself since we got home. It wasn't really as unpleasant as I'd imagined to would be.

I'm very glad to be home where I can eat real edible food, albeit a soft bland diet. The hospital food was either too sweet or too salty and the eggs must have come from rubbery chickens.

One of my major complaints is that no-one  in the SICU unit was authorised or trained to  access my port, so all the blood test sticks were in  my arms with their tiny, roling veins. Needless to say my arms turned several shades of purple and red and swelled up like  fully fed ticks. 

Jim, I hope you begin to feel better.

Grace/lizard44

It's so good to hear that you are home and eating what you want besides terrible hospital food.  Yup you're butt is going to hurt for awhile so get used to standing while you eat.  I'd never sit while eating for quite some time because of the radiation and then the surgery.  Just try to do a sitz bath as that can be very soothing and you can do that several times a day.  You can get them sometimes at a pharmacy but if not, your hospital can recommend where to go.  Hope you feel better soon and thanks for checking in.

Hugs!  Kim

lizard44 said:

Thanks for the kind thoughts

And to Trubrit for posting on my behalf.

The surgery on Tuesday went well.  The surgeoin said They took out about a foot of colon plus the rectum, anus, etc. and he got good clear margins. Preliminary pathology reports indicate that  the lymph nodes were  clear and none of them tested  positive for cancer.

Like Jim, I am hurting like the dickens. Most of the pain is in my backside, which makes sitting for any length of time extremely uncomfortable. I was discharged today, with a prescription for  Hydrocodon for pain with  my drainage tube still attached. I've already done one emptying of the colostomy bag  and one emptying of the drainage tube receptacle all by myself since we got home. It wasn't really as unpleasant as I'd imagined to would be.

I'm very glad to be home where I can eat real edible food, albeit a soft bland diet. The hospital food was either too sweet or too salty and the eggs must have come from rubbery chickens.

One of my major complaints is that no-one  in the SICU unit was authorised or trained to  access my port, so all the blood test sticks were in  my arms with their tiny, roling veins. Needless to say my arms turned several shades of purple and red and swelled up like  fully fed ticks. 

Jim, I hope you begin to feel better.

Grace/lizard44

Thanks for your descriptive post and am glad that you're back home and in familiar surroundings. I will keep the pain level in mind in my planning stuff (I don't really think that you can plan for it but I will decrease my expectations of what I can get done while in the hospital). My story on needle sticks is that my veins have always been a problem in my right arm and I looked like I was a drug user after the initial bloodwork and sometimes they had to go into the back of the palm which was annoying. Then I asked them to try the left arm and they had much better results so I always have them go into the left arm these days.

Are the pain meds helping with the pain at home now or do they just take the sharp edge off?

airborne72 said:

Just another Saturday night...

When I was a young buck I never dreamed that I would be sitting at home on Saturday night eating a petite, bland supper listening to my small intestines burp out green slime into a bag covering a hole in my side.  This is going to take some adjustment, but what choice do we have?

It is good to read the words from Grace.  She is another "knife" survivor.  Welcome home Grace.

Her comments raised two questions for me to ask my surgeon.  I never had a drainage port.  Why?  I have had them for all previous surgeries.  When I came home I looked like the blimp, swollen all over.  For the past 24 hours I have been urinating every two hours consistently and my weight has dropped about 4 pounds as a result.  I wonder if a drainage port would have been beneficial.  The other question relates to my pathology report.  I specifically asked my surgeon (during one of the brief 7 a.m. post surgery inpatient visits) if the tissue had been provided to a pathologist and he said yes, in a nonchalant way, but that was it.   As of right now, I have no idea about lymph nodes or margins.  I was not impressed with this surgeon to begin with but stayed with him so I could be admitted to the hospital where my daughter works.  Her attendance to me was wonderful and offset the less than stellar performance by the surgeon and anesthesiologists.  Just glad to be home so I can take care of myself.  Oh well, the pathology report and staging can be my surprise during my upcoming post-surgery consult.

I do have one more comment and it relates to pain control.  Grace mentioned her discharge script for hydrocodone (a mild narcotic) and her level of pain.  I know full well what my level of pain was and it was not adequately addressed in the hospital.  I am suspicious that the reaction to the current opiod crisis is negatively impacting the quality of care (pain control) for inpatients, and that is unacceptable.  I believe that the government crack down is causing physicians (in this case surgeons) to sparingly use opiods, to a level of negatively affecting the recovery from the surgery.  It's tough to relax when you are balled up in a painful knot; that was my experience this week.

Enough of my rant.  Welcome back Grace.  Our strength increases with numbers.

Jim

Well, that's a level of descriptive prose that paints a vivid picture to look forward too.

My state is probably the worst in the nation for opiod overdose deaths per capita and our politicians have certainly made note of what we're doing about it. Some articles on the issue regarding difficulty in getting pain meds:

https://www.nytimes.com/2017/09/17/health/opioid-painkillers-insurance-companies.html?_r=0

http://www.bendbulletin.com/topics/5342867-151/opioid-crisis-pain-patients-pushed-to-the-brink

http://www.slate.com/articles/health_and_science/medical_examiner/2017/08/cutting_down_on_opioids_has_made_life_miserable_for_chronic_pain_patients.html

https://www.statnews.com/2017/01/17/chronic-pain-management-opioids/

My local hospital is on EPIC which is one of the major Electronic Medical Records (EMR) systems used by major hospitals and it allows them to share information about patients between caregivers. It also provides an online patient portal so that I can get visit notes, pathology reports, bloodwork reports and allows me to chat with my doctor via an email function. The hospital with the ER that I originally went to has one of these online portals as well. My surgeon's hospital also has one of these via EPIC and I actually found the information about the tumor shrinkage from the portal. I met with the surgeon on Tuesday and she didn't mention anything about the tumor size. I received an email on Thursday with the pathology report and read it on Friday morning and that's where I saw the details from the MRI. I wouldn't think that the doctors would have your data off the top of their head but they should be able to have an assistant get the information to you. Perhaps you could check to see if your hospital has an online patient portal. I didn't actually start using it until about five weeks after my ER visit. It's a convenient way to keep up with your bills, copays and deductibles as well to make sure that nothing gets lost in the mail.

Welcome back to you as well Jim and I hope that you can resolve your pain issue.