My Dismal Weekly Poop Count

Annabelle41415

It's been years since my ilestomy reversal and just recently took a count daily of how many times in a week that I'd went. This was a daily count and most days were 14 but one was only 5 but the total count was 75 in one week.  It's nothing anything that I've eaten, nothing I've drank, nothing different.  I'm going during the night, morning, afternoon, evening.  Please new members don't take this as normal as some reversals go great, but some like mine, are just more complicated.  If I'm going some place during the day then no food for me until I'm comfortably at or near home.  I'm sad some times because I'm not able to attend any functions in the afternoon or at night only because I'm not sure if I'll have to go the bathroom or have an accident.  I've missed a lot of my grandkids birthday parties, graduations and get togethers, but I'm alive, I'm making my life happy and I'm living my new normal.  I'm definitely keeping the toilet paper companies very happy.  75 times in a week is a lot.  It's hard to maintain a life, but I'm doing it in between toilet breaks.

Hugs!  Kim

Dmac1957

Tip

Hello,

i had my surgery 3.5 years ago. I had my bottom 16 inches remove. I don’t have any anal muscles or feeling. I had simalar issues. I now take 6-9 Limotil tabs a day. I keep myself slightly to the constipated side. I now go two days a week. Yes days. On my day to go once I start I completely empty the tank. I now only need to wear Depends about 3 days a week. I also got a suggestion from my infusion nurse for diarrhea. She told me to try eating a handful of the small marshmallows after a meal. As they act as a bonding agent. It actually works for me. Just my 2 cents.

God Bless, Dennis

Trubrit

Marshmallows

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

JanJan63

That's a lot of 'going'. I'm

That's a lot of 'going'. I'm sorry you're living this way, I can totally relate because that's how I used to be.

I have an illeostomy and am not getting it reversed. I had IBS my whole adult life before the colon cancer and my surgeon said it would probably be worse after the resection so I'm keeping it. It was bad before, I can't imagine it worse. Like you, it negatively affected my life. Going out and not eating, not going anywhere on a really bad day, having to know where the bathroom was everywhere I went, choosing an employer based on where the bathroom was located. It was horrible. The bag is such a relief after that. 

Hugs,

Jan

BRHMichigan

My situation is like Jan's

...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. 

Cindy225

Daily Count

Oh-my Kim, 14 times a day/75 times a week is unbelievably challenging.  I am so sorry that your experiencing this and the impact it has on your life.  Your strength comes through your posts.     

I've had my reversal now for 8 months.  I'm still learning the new normal, food triggers, schedule, lifestyle but finding my cadence and hope that within a year my routine will be more established. 

Keeping you in my thoughts that you get relief…

Hugs back.  Cindy  

Annabelle41415

Dmac1957 said:

Tip

Hello,

i had my surgery 3.5 years ago. I had my bottom 16 inches remove. I don’t have any anal muscles or feeling. I had simalar issues. I now take 6-9 Limotil tabs a day. I keep myself slightly to the constipated side. I now go two days a week. Yes days. On my day to go once I start I completely empty the tank. I now only need to wear Depends about 3 days a week. I also got a suggestion from my infusion nurse for diarrhea. She told me to try eating a handful of the small marshmallows after a meal. As they act as a bonding agent. It actually works for me. Just my 2 cents.

God Bless, Dennis

Immodium

I'm not able to take any type of pill that slows me down like Limotil or Immodium as 1/4 pill will constipate me for days and then I'll double over in agony from not going.  They took my rectum out and made a J-pouch plus took a lot of colon so my digestive tract is a lot shorter.  I'll have to try a couple marshmallows though - sounds interesting.  Thanks for the suggestion.

Kim

Annabelle41415

Trubrit said:

Marshmallows

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

Logging Food Record

I've tried to do that but it was the same everyday and no matter what was on my diet, it just didn't change.  I'm so happy that yours is doing so much better.

Kim

Annabelle41415

JanJan63 said:

That's a lot of 'going'. I'm

That's a lot of 'going'. I'm sorry you're living this way, I can totally relate because that's how I used to be.

I have an illeostomy and am not getting it reversed. I had IBS my whole adult life before the colon cancer and my surgeon said it would probably be worse after the resection so I'm keeping it. It was bad before, I can't imagine it worse. Like you, it negatively affected my life. Going out and not eating, not going anywhere on a really bad day, having to know where the bathroom was everywhere I went, choosing an employer based on where the bathroom was located. It was horrible. The bag is such a relief after that. 

Hugs,

Jan

IBS

I've heard that IBS can be so controlling of your life, but glad that the ostomy is working for you.  With my problem, having a bathroom near isn't always the answer and just standing there it can come out and there is nothing I'm able to do about it.  Most times it's just like pudding or water so I'm familiar, like you, with knowing where the bathrooms needs to be it's just that I'm not always able to get there fast enough.  Glad the bag is serving you well.

Hugs!  Kim

Annabelle41415

BRHMichigan said:

My situation is like Jan's

...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. 

Ostomy

I'm so glad that the ostomy is working for you.  I wasn't sure what to expect after my reversal as it can work very well for a lot.  Mine just didn't so well.  The cost of having an ostomy can be hard on the budget sometime, but it's well worth it if your quality of life has improved.  Thank you for the nice compliment.  I've received so much help on this board through the years and always wanted to make sure I'm a positive or helpful person when able.

Hugs!  Kim

Annabelle41415

Cindy225 said:

Daily Count

Oh-my Kim, 14 times a day/75 times a week is unbelievably challenging.  I am so sorry that your experiencing this and the impact it has on your life.  Your strength comes through your posts.     

I've had my reversal now for 8 months.  I'm still learning the new normal, food triggers, schedule, lifestyle but finding my cadence and hope that within a year my routine will be more established. 

Keeping you in my thoughts that you get relief…

Hugs back.  Cindy  

You seem to be adjusting well reading your previous post about running again.  Thank you for your thoughts and post.  Hoping that you improve each and every day.

Hugs!  Kim

airborne72

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

 

Cindy225

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

Cindy225 said:

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

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

Cindy225

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

...always a runner!

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

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

 

Oh what a Great Album

Still have that album - yes that is my era of music and that dates me big time LOL.  I'm wishing you the very best and like was stated above most reversals come out great, mine just was a little different as the rectum was removed and a J-Pouch installed and I'm not sure if you are having that procedure as well.  I'm wishing you the utmost success and praying for the best situation.  Thanks for the reminder of such a great song - makes me want to listen to it again.  Let us know how your surgery goes.

Kim

Annabelle41415

Cindy225 said:

...always a runner!

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

 

Fart or Shart

LOL yup you never know about those.

Kim

Annabelle41415

Cindy225 said:

Daily Count

Oh-my Kim, 14 times a day/75 times a week is unbelievably challenging.  I am so sorry that your experiencing this and the impact it has on your life.  Your strength comes through your posts.     

I've had my reversal now for 8 months.  I'm still learning the new normal, food triggers, schedule, lifestyle but finding my cadence and hope that within a year my routine will be more established. 

Keeping you in my thoughts that you get relief…

Hugs back.  Cindy  

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

Cindy225

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

Curious

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

 

beaumontdave

Dmac1957 said:

Tip

Hello,

i had my surgery 3.5 years ago. I had my bottom 16 inches remove. I don’t have any anal muscles or feeling. I had simalar issues. I now take 6-9 Limotil tabs a day. I keep myself slightly to the constipated side. I now go two days a week. Yes days. On my day to go once I start I completely empty the tank. I now only need to wear Depends about 3 days a week. I also got a suggestion from my infusion nurse for diarrhea. She told me to try eating a handful of the small marshmallows after a meal. As they act as a bonding agent. It actually works for me. Just my 2 cents.

God Bless, Dennis

Marshmallows, I like it! We

Marshmallows, I like it! We kids have been looking for something for mom's "looseness" and there's a whole list of things she can't use to slow things down. We'll give that a try.............................................Dave

Annabelle41415

Cindy225 said:

Curious

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

 

Wonderful

Mine was 5 cm and they had to do radiation, but it shrunk it to the tip of a ball point pen so that was great.  Radiation did a number to my inners just terrible, not to mention my vagina and anus.  So glad that you are doing so well.  Thanks for sharing your story.

Hugs!  Kim