My Dismal Weekly Poop Count

Interesting!

Since I started this journey, I have kept a record - I call it my Log Blog - of how many times I go in one day - Along with keeping a food record, I can pretty much tell what foods set me off on a bad day. 

It is interesting - and kinda sad - to see how it ruled my life in those early days.

Mornings are definitely the worst for me. People around me know when I'm missing of a morning that I'm having one of 'those' days. 

I am sorry for the amount of control this has on your life, Kim. And for all of you who live with the ostomy's.  I am gratgeful that I was spared. 

Dennis, I had a saying during the bad times 'Depends are my friends' (even if there is no S at the end of the product). 

Tru

...only I have a permanent colostomy. No reversal for me. The entire year before my surgery consisted of going to the bathroom up to 6 times an hour. It was interrupting my life miserably. I remember soon after diagnosis, a young, healthy gastro doc was telling me that my quality of life would actually be better with a permanent colostomy. I was so angry with him! I now would like to thank him because he was correct. For me, it's been a blessing. NEVER thought I'd be able to say that. Its not perfect, as there is the monthly durable medical equipment expense, and the occasional exploding bag! But overall I feel like I can go out again.

Kim, you are always so positive, it's eye opening to know you go through this. Seems we all have different daily battles from CRC. Thank you for sharing and supporting everyone here with such kindness. 

airborne72 said:

Dark Side of the Moon - Pink Floyd

Kim:

I appreciate your sharing of this information and I feel compassion for your situation.  My reversal surgery will be performed in a matter of days so my attention is immediately directed to any information related to reversals and subsequent quality of life.  I read your post twice to glean as much information as possible, all the while feeling both sympathy and empathy (if my reversal results are similar) for you.

A fww decades ago Pink Floyd recorded a song entitiled Dark Side of the Moon.  Those who may have had the opportunity to know (by inquisition, education or life), there is a side of the moon that us earthlings never see due to the rotational patterns of the celestrial masses in our section of the universe (that is a politically correct sentence if I ever read/wrote one).  The underlying message in the song related to personal relationships and communication, etc. implying that enduring relationships are dependent upon good and transparent communications.  Relatedly, I strongly believe that the dark side of the moon of ostomy reversals (effects) are not openly, adequately, and accurately discussed by CRC medical practitioners.  To date, no one has even mentioned the common side effects to me.  I wonder if and when they will?

After my reversal I intend to provide a brief, on-going synopsis of the readjustment of my intestines so others may benefit from my situation.  Each of us are unique; our cancers are unique to us; and the results of medical intervention to our unique cancers is dependent upon our individual uniqueness.  I sure do hope that the outcome of my reversal is a positive event.  We'll see.

Jim

 

Hi Jim – Passing along my experience on my reversal for your consideration as it sounds like you will be going through it very soon.  I’ll preface it by saying I would do it over again but the early weeks were pure hell.

The medical community referred to my reversal surgery as a victory lap so I expected a relatively easy procedure and recovery given the grueling 6-hour surgery that I had to remove the rectum and lymph-nodes.  The reversal surgery went well but the after affects I wasn’t quite prepared for.  Check with your surgeon as to how your wound will be treated.  Mine was left open without any stitches so fecal matter wouldn’t create any infection or abyss.  I had to learn how to dress the wound myself which was very deep and wide with saline solution and then had to pack it with sterile gauze strips.  I felt faint every time I did it staring at what looked like a gunshot wound in my gut.  I felt I could have been better trained but carried on nonetheless.  The diarrhea I experienced was uncontrollable and very painful.  I actually stayed in the hospital longer than my original surgery due to blood in my stool and the potential for blood clots.  

Not to scare you as this is a rarity but two days after I was discharged I had an arterial bleed from the wound and had to be rushed by ambulance to the nearest hospital.  The internal wound required two stitches. Very scary. Not a normal event and no clear reason why it happened.

I did have a wound care nurse come several times a week to ensure my wound was healing properly.  Another unusual side effect was that as my wound healed the internal skin healed faster than the external/side skin and as a result a hemorrhoid like growth pushed through the new skin and caused some bleeding.  Apparently, this is normal.

My surgeon advised me to to research LAR Syndrome side effects. I found the info about what to expect helpful for me.   http://colonrectalsurg.wustl.edu/en/Patient-Care/Low-Anterior-Resection-Syndrome

As I said the early weeks were compete hell. The continuous diarrhea was so unpredictable and painful.  Would reco flushable wipes or wetting the toilet paper before using. Lots of desitin.  My surgeon reco’d talking with a nutritionist to develop a plan to introduce foods slowly and how to incorporate soluble fiber into my diet which was really helpful.

I was discouraged early on but 8 months later I am learning my new normal and living a full life.  I am aware of my diet and triggers. I splurge knowing the potential outcomes!  Enjoying March Madness eating lots of spicy food and drinking beer that will catch up with me but it’s all good!

Best in your reversal journey!

Cindy

airborne72 said:

Once a runner...

Thanks Cindy.  That is just the type of "real" information that I need.  I had some awareness regarding the wound healing process, but to date no one has even mentioned it.

My hope is that I can successfully transition away from the ileostomy and adjust to whatever new normal takes its place.  I guess there are other cancers that disrupt life after the cure or during the remission, but it seems to me that CRC is the most persistently undermining cancer in that regard.  As a diversionary thought, imagine what it would be like to live with this challenge and NOT have the luxury of indoor plumbing!

For the record, I am a retired runner.  Two spinal fusions took care of that passion, which I enjoyed for three decades.  In fact, when my ortho surgeon briefed me about the condition of my lumbar spine, the recommended surgery and its potential results, it wasn't until he said that I would never run again that I literally teared up.  I miss running dearly.  It provided me with energy and clarity of thought each and every run.  Perhaps it was God's way of preparing me to "run" to the bathroom for the balance of my life.

Jim

Great to hear that running has been such a part of your life Jim!  Wow 30 years is a wonderful achievement... So sorry about your back and having to give it up.  I know how special running is and tear up thinking about having to stop... 

"Running" to the bathroom you will!  Urgency and control issues are rough in the beginning but you eventually get to know your own body.  Keep in mind, you can't control pushing or holding it in so it does what it wants. So you never know if it's a "poot" or a "poop".  Oh well enough "potty" talk. :-)    

Cindy

Annabelle41415 said:

Curious

Cindy:  Just curious if you had rectal cancer.  Some of us have a colostomy and others an ileostomy for a reversal.  My rectum was removed so wondering if you had the same surgery.  Just love your picture

Hugs!  Kim

Hi Kim – Yup had rectal cancer and the LAR surgery with a diverting ileostomy; removed tumor, rectum and lymph-nodes.  The tumor was 4 cm from the anal verge so it was tricky if I would get the ileostomy or permanent colostomy. My surgeon specializes in anal sphincter preservation and she felt confident with the ileostomy approach.

What I think really helped my recovery was that the tumor was small; 3 cm so I did not need the initial radiation to reduce the tumor.  After the surgery my surgeon and oncologist presented my case to the hospital tumor board not to do radiation as a follow up.  It would reduce my stats % survivability by 2% but they both felt the quality of life bowel functionality issues were more significant.

Thanks about the photo! 

Hugs back! Cindy