Anyone had a herniated bowel?

slpmom

Brought my husband into emergency yesterday and today they are confirming that he has not one but TWO hernias - I don't quite understand what happened and have to try and get a hold of a doctor today - the bowel is apparently herniated through the diaphragm on both sides?? Its very frustrating, maybe because its a holiday weekend, but we have limited info at this point. He will need surgery but they told him this morning it may not be for 4 days??? He's in a LOT of pain and can't eat - he is on heavy doses of dilaudid and antavan to keep him calm but he's still in pain. Is this a big surgery? I can't find a lot on the internet about this type of herniation, especially after esophagectomy. We are 6mos post Ivor Lewis.

LorettaMarshall

"slpmom" - Here is an article re herniation post Esophagectomy

 Dear slpmom:

Just want you to know that someone has read your letter.  Seems your husband has had more than his share of complications regarding his Ivor Lewis surgery.  Here is an abstract from the National Institutes of Health that tell about studies of patients who experienced herniated abdominal organs post Esophagectomy.  Transthoracic Esophagectomy (TTE) is also known as the “OPEN” Ivor Lewis surgery.  It hurts to even read about your husband’s plight.  It’s enough anguish just recuperating from a successful Esophagectomy, much less dealing with rare complications.    Surely your husband’s thoracic surgeon will perform the repairs.  It’s certainly no job for Emergency Room doctors.  I am assuming your husband is in the hospital.  The operation detailed below did require an extensive hospital stay.

The information may be something that you have already found out by your own research.   Moreover, I can’t be certain that these surgeries referenced below are applicable in your husband’s case.   You could print it out, and ask your doctor if the cases referenced  are applicable to your husband's situation.  Interestingly, here in the USA, we spell the surgery as an “esophagectomy” whereas there are other countries that spell it “oesophagectomy”.  They are one and the same. If these cases are similar to your husband’s condition, you can see there are successes.  I can’t begin to imagine the extreme pain that your husband is in, to say nothing of your own emotional suffering.  I’m sorry I can’t be of more help.    

Let's face it.  This is just a distressing time.  You are probably asking yourself, "Do the problems ever end?"  Believing that there is light at the end of this dark tunnel will help you "get through" this.  It’s my hope that a successful surgery will be performed quickly.  At this point you must be wondering if things are ever going to be better.  At times, believe me, many of us have had those same doubts at times.  So take the long look.  There can be triumph over this tragedy, and I'm hoping that you two can soon see the light of day again.  Dealing with cancer involves many treacherous turns, but there are stories of perseverance and eventual success.  Life is hard but don't lose hope. 

Loretta

Wife of William, Minimally Invasive Ivor Lewis Esophagectomy @ University of Pittsburgh Medical Ctr. by Dr. James D. Luketich on May 17, 2003.  (William now entering 14^th year of remission with NED)

____________________________________________________________

1.  http://www.ncbi.nlm.nih.gov/pubmed/18036896

“Diaphragmatic hernia after conventional or laparoscopic-assisted transthoracic esophagectomy…

The median time between esophagectomy and diagnosis of herniation was 8 months. The 9 patients presented with different degrees of symptoms: 3 were asymptomatic, 2 had minor symptoms, and 4 had acute symptoms. All had a herniation of abdominal organs into the left hemithorax.

One patient was asymptomatic, and no surgical repair was performed. Another patient refused the recommended reoperation. The other 7 patients underwent surgical repair of the diaphragmatic hernia by an abdominal approach. All had reduction of the herniated bowel into the abdominal cavity and closure of the hiatal defect.

Resection of small bowel was performed in 1 patient for strangulation, and another patient underwent splenectomy for bleeding. Median hospital stay was 16 days…Diaphragmatic herniation after esophagectomy mostly occurs into the left chest. Surgeons should be aware of this rare complication in patients presenting with symptoms of intestinal obstruction or respiratory complaints after esophagectomy…”

 -------------------------

These two links seem to deal with the same type of surgery after an esophagectomy.  Perhaps they will be helpful. 

www.ncbi.nlm.nih.gov/pubmed/17663385

 

Diaphragmatic herniation after oesophagectomy: a report of two cases

 

 --------------------

 

www.ncbi.nlm.nih.gov/pubmed/15664372

 

Diaphragmatic hernia in a rare complication of oesophagectomy for cancer

 

 

slpmom

LorettaMarshall said:

"slpmom" - Here is an article re herniation post Esophagectomy

 Dear slpmom:

Just want you to know that someone has read your letter.  Seems your husband has had more than his share of complications regarding his Ivor Lewis surgery.  Here is an abstract from the National Institutes of Health that tell about studies of patients who experienced herniated abdominal organs post Esophagectomy.  Transthoracic Esophagectomy (TTE) is also known as the “OPEN” Ivor Lewis surgery.  It hurts to even read about your husband’s plight.  It’s enough anguish just recuperating from a successful Esophagectomy, much less dealing with rare complications.    Surely your husband’s thoracic surgeon will perform the repairs.  It’s certainly no job for Emergency Room doctors.  I am assuming your husband is in the hospital.  The operation detailed below did require an extensive hospital stay.

The information may be something that you have already found out by your own research.   Moreover, I can’t be certain that these surgeries referenced below are applicable in your husband’s case.   You could print it out, and ask your doctor if the cases referenced  are applicable to your husband's situation.  Interestingly, here in the USA, we spell the surgery as an “esophagectomy” whereas there are other countries that spell it “oesophagectomy”.  They are one and the same. If these cases are similar to your husband’s condition, you can see there are successes.  I can’t begin to imagine the extreme pain that your husband is in, to say nothing of your own emotional suffering.  I’m sorry I can’t be of more help.    

Let's face it.  This is just a distressing time.  You are probably asking yourself, "Do the problems ever end?"  Believing that there is light at the end of this dark tunnel will help you "get through" this.  It’s my hope that a successful surgery will be performed quickly.  At this point you must be wondering if things are ever going to be better.  At times, believe me, many of us have had those same doubts at times.  So take the long look.  There can be triumph over this tragedy, and I'm hoping that you two can soon see the light of day again.  Dealing with cancer involves many treacherous turns, but there are stories of perseverance and eventual success.  Life is hard but don't lose hope. 

Loretta

Wife of William, Minimally Invasive Ivor Lewis Esophagectomy @ University of Pittsburgh Medical Ctr. by Dr. James D. Luketich on May 17, 2003.  (William now entering 14^th year of remission with NED)

____________________________________________________________

1.  http://www.ncbi.nlm.nih.gov/pubmed/18036896

“Diaphragmatic hernia after conventional or laparoscopic-assisted transthoracic esophagectomy…

The median time between esophagectomy and diagnosis of herniation was 8 months. The 9 patients presented with different degrees of symptoms: 3 were asymptomatic, 2 had minor symptoms, and 4 had acute symptoms. All had a herniation of abdominal organs into the left hemithorax.

One patient was asymptomatic, and no surgical repair was performed. Another patient refused the recommended reoperation. The other 7 patients underwent surgical repair of the diaphragmatic hernia by an abdominal approach. All had reduction of the herniated bowel into the abdominal cavity and closure of the hiatal defect.

Resection of small bowel was performed in 1 patient for strangulation, and another patient underwent splenectomy for bleeding. Median hospital stay was 16 days…Diaphragmatic herniation after esophagectomy mostly occurs into the left chest. Surgeons should be aware of this rare complication in patients presenting with symptoms of intestinal obstruction or respiratory complaints after esophagectomy…”

 -------------------------

These two links seem to deal with the same type of surgery after an esophagectomy.  Perhaps they will be helpful. 

www.ncbi.nlm.nih.gov/pubmed/17663385

 

Diaphragmatic herniation after oesophagectomy: a report of two cases

 

 --------------------

 

www.ncbi.nlm.nih.gov/pubmed/15664372

 

Diaphragmatic hernia in a rare complication of oesophagectomy for cancer

 

 

Thanks so much

Oh my gosh - thank you so much for the articles Loretta - and for responding. I knew it was extremely rare and that probably no one out there would have gone through this but the info from the articles is very helpful. Yes he is in the hospital and will be for a few weeks I am guessing. I am not telling him that though - he keeps asking if he can go home and wait for the surgery to be scheduled! That is how much pain medication is in him - he doesn't even have a true grasp of "no, you are on IV antibiotics (pneumonia in one lung), strong  IV pain killers and now oxygen under your nose so you cannot go home" .  I think they want to try and clear up the pneumonia before operating but also, the thoracic surgeon that performed the Ivor Lewis is the one who has to repair the hernia (that is what the hospital said) and he is on vacation till tomorrow! Then it is a matter of organizing everything they said. I work during the day and I have left messages for doctors to call me but have not been called. After work, I go and get info from my husband (not reliable) and the nurses (limited info). My husband is devastated and very depressed at the thought of having to be "opened up" again. We thought we were on the mend...he had just started working part-time again last month. Financially this is also devastating (he is on a contract - no work, no pay). I am at work, trying to hold it all together when all I want to do is fall apart. Also he is supposed to go get more chemo but has been too sick with aspiration pneumonias to get it! I am afraid any microscopic cells that are left are roaming his body, on the attack.  I like that  the articles did state that the surgeries were successful. It was helpful to see the recuperation window too, even if it is a little long. Wow, I am shaking my head at how this could have happened....

Joel C

slpmom said:

Thanks so much

Oh my gosh - thank you so much for the articles Loretta - and for responding. I knew it was extremely rare and that probably no one out there would have gone through this but the info from the articles is very helpful. Yes he is in the hospital and will be for a few weeks I am guessing. I am not telling him that though - he keeps asking if he can go home and wait for the surgery to be scheduled! That is how much pain medication is in him - he doesn't even have a true grasp of "no, you are on IV antibiotics (pneumonia in one lung), strong  IV pain killers and now oxygen under your nose so you cannot go home" .  I think they want to try and clear up the pneumonia before operating but also, the thoracic surgeon that performed the Ivor Lewis is the one who has to repair the hernia (that is what the hospital said) and he is on vacation till tomorrow! Then it is a matter of organizing everything they said. I work during the day and I have left messages for doctors to call me but have not been called. After work, I go and get info from my husband (not reliable) and the nurses (limited info). My husband is devastated and very depressed at the thought of having to be "opened up" again. We thought we were on the mend...he had just started working part-time again last month. Financially this is also devastating (he is on a contract - no work, no pay). I am at work, trying to hold it all together when all I want to do is fall apart. Also he is supposed to go get more chemo but has been too sick with aspiration pneumonias to get it! I am afraid any microscopic cells that are left are roaming his body, on the attack.  I like that  the articles did state that the surgeries were successful. It was helpful to see the recuperation window too, even if it is a little long. Wow, I am shaking my head at how this could have happened....

I aslo ended up with a hernia

Hi L,

I was diagnosed with a diaphragmatic hernia ~3 years post MIE .  My bowel had entered the left side of my chest and was strangling my left lung.  It was also pushing up on my stomach in my chest causing severe reflux with constant nausea, frequent vomiting and difficulty breathing.  Also because my stomach was pushed to the side by the bowel it was contributing to my gastroparesis.  The hernia went undiagnosed for about a year but that’s another long unfortunate story.  The surgeon that did my MIE also repaired the hernia.  My MIE was in 2010 and the hernia repair was 2013.  The recovery from the hernia surgery was slow and kind of difficult.  From what I understand the intestines do not like to be touched and when they are handled they can shut down and take awhile to get back into their normal rhythm.  In my case it took close to a month before I was able to eat even somewhat normally.  If there is anything I can do to help you and your husband out please feel free to ask.

Joel

slpmom

Joel C said:

I aslo ended up with a hernia

Hi L,

I was diagnosed with a diaphragmatic hernia ~3 years post MIE .  My bowel had entered the left side of my chest and was strangling my left lung.  It was also pushing up on my stomach in my chest causing severe reflux with constant nausea, frequent vomiting and difficulty breathing.  Also because my stomach was pushed to the side by the bowel it was contributing to my gastroparesis.  The hernia went undiagnosed for about a year but that’s another long unfortunate story.  The surgeon that did my MIE also repaired the hernia.  My MIE was in 2010 and the hernia repair was 2013.  The recovery from the hernia surgery was slow and kind of difficult.  From what I understand the intestines do not like to be touched and when they are handled they can shut down and take awhile to get back into their normal rhythm.  In my case it took close to a month before I was able to eat even somewhat normally.  If there is anything I can do to help you and your husband out please feel free to ask.

Joel

Thanks!!!

Thanks so much Joel!! I am sending you a PM.

LorettaMarshall

Joel C said:

I aslo ended up with a hernia

Hi L,

I was diagnosed with a diaphragmatic hernia ~3 years post MIE .  My bowel had entered the left side of my chest and was strangling my left lung.  It was also pushing up on my stomach in my chest causing severe reflux with constant nausea, frequent vomiting and difficulty breathing.  Also because my stomach was pushed to the side by the bowel it was contributing to my gastroparesis.  The hernia went undiagnosed for about a year but that’s another long unfortunate story.  The surgeon that did my MIE also repaired the hernia.  My MIE was in 2010 and the hernia repair was 2013.  The recovery from the hernia surgery was slow and kind of difficult.  From what I understand the intestines do not like to be touched and when they are handled they can shut down and take awhile to get back into their normal rhythm.  In my case it took close to a month before I was able to eat even somewhat normally.  If there is anything I can do to help you and your husband out please feel free to ask.

Joel

Joel C-Good to "see you" again-William says "hello"

 Hello Joel –

 It’s good to “see” you again.  Can you give me and my husband William an update on where you are today since we last conversed with one another?   It’s been a long time since our last conversations, although we have kept many of our talks on my own WORD file.

 I am glad you were able to share your experience with “slpmom.”  She and her husband are really having a hard time of recovery.  If you read my “about me” page, you know that I am now the patient, and William (Bill) is now the caregiver.  That was the opposite when we last talked.  My diagnosis is Peritoneal Carcinomatosis/Ovarian Cancer. (That’s Stage IV). I went to UPMC for a 2^nd opinion and exploratory surgery.  They found too many tumors too large to perform Cytoreductive Surgery.  So I came home, had Carboplatin and Taxol, that reduced the tumors to a size where I could have surgery to have some “non-essential” organs removed.  That included spleen, gall bladder, ovaries, fallopian tubes, omentum and resectioning of my intestines. (I had already had my uterus removed at age 36.)

 So when you said, “From what I understand the intestines do not like to be touched and when they are handled they can shut down and take a while to get back into their normal rhythm”, I said to myself, “You’ve got that right.”  After surgery, it took 10 days for my bowels to “wake up”.  During that time I had a diet of ice chips!  It wasn’t pleasant.  While the surgery wasn’t intended to be curative, it removed several places where the tumors could attach themselves.  I spent 42 days in the hospital there in Pittsburgh, and another 3 months there at a UPMC family house for Home Health Care before coming home in October of 2013. Needless to say, I’m thrilled to be alive.  I could have died within 6 months from my diagnosis.  And yes there are problems, and the scans show tumors are growing, I will always have to decide between ongoing treatments and “quality of life”.  I know too much to believe that continual chemo will always be a viable option.    

 During the first week out from my surgery, William came down with a severe case of Shingles.  That was in July of 2013, and he has permanent nerve damage and pain that still persists today, but it “ain’t cancer!”  He’s not taking anything for pain—just toughing it out.  We’ve set a new level of tolerance, anything short of cancer is not a “10” in our book!  So that’s where we are today.

William is now entering his 14^th year of remission.  Up until my diagnosis, we were making our annual trip to UPMC for a yearly full-body PET/CT scan.  But for the last 2 times, he has had his scans here.  So Joel, let’s be honest, anytime we see an “old pal” that’s still posting, we say, “Thank God” they’re still alive.”  So now I’m posting some under Ovarian, Peritoneal and Esophageal links.   So far, so good, for both of us.  God has given me His peace, and like you, we take life literally one day at a time.  So once more, it’s good to know you’re still here, and will be able to share your own personal “post-op hernia” experience with “slpmom”. 

 Like William always likes to say, “We’re just one beggar telling another beggar where to find a piece of bread.”  You’ve already been where her husband is going.  And that’s what you’re doing—giving “slpmom” a piece of bread.  And man is she ever hungry for a “morsel” of hope.

 May God continue to give you and Tammy many more years together.

 Loretta

Wife of William Marshall, EC Stage III (T3N1M0) - (MIE) @ UPMC – May 17, 2003 by Dr. James D. Luketich

 

Joel C

LorettaMarshall said:

Joel C-Good to "see you" again-William says "hello"

 Hello Joel –

 It’s good to “see” you again.  Can you give me and my husband William an update on where you are today since we last conversed with one another?   It’s been a long time since our last conversations, although we have kept many of our talks on my own WORD file.

 I am glad you were able to share your experience with “slpmom.”  She and her husband are really having a hard time of recovery.  If you read my “about me” page, you know that I am now the patient, and William (Bill) is now the caregiver.  That was the opposite when we last talked.  My diagnosis is Peritoneal Carcinomatosis/Ovarian Cancer. (That’s Stage IV). I went to UPMC for a 2^nd opinion and exploratory surgery.  They found too many tumors too large to perform Cytoreductive Surgery.  So I came home, had Carboplatin and Taxol, that reduced the tumors to a size where I could have surgery to have some “non-essential” organs removed.  That included spleen, gall bladder, ovaries, fallopian tubes, omentum and resectioning of my intestines. (I had already had my uterus removed at age 36.)

 So when you said, “From what I understand the intestines do not like to be touched and when they are handled they can shut down and take a while to get back into their normal rhythm”, I said to myself, “You’ve got that right.”  After surgery, it took 10 days for my bowels to “wake up”.  During that time I had a diet of ice chips!  It wasn’t pleasant.  While the surgery wasn’t intended to be curative, it removed several places where the tumors could attach themselves.  I spent 42 days in the hospital there in Pittsburgh, and another 3 months there at a UPMC family house for Home Health Care before coming home in October of 2013. Needless to say, I’m thrilled to be alive.  I could have died within 6 months from my diagnosis.  And yes there are problems, and the scans show tumors are growing, I will always have to decide between ongoing treatments and “quality of life”.  I know too much to believe that continual chemo will always be a viable option.    

 During the first week out from my surgery, William came down with a severe case of Shingles.  That was in July of 2013, and he has permanent nerve damage and pain that still persists today, but it “ain’t cancer!”  He’s not taking anything for pain—just toughing it out.  We’ve set a new level of tolerance, anything short of cancer is not a “10” in our book!  So that’s where we are today.

William is now entering his 14^th year of remission.  Up until my diagnosis, we were making our annual trip to UPMC for a yearly full-body PET/CT scan.  But for the last 2 times, he has had his scans here.  So Joel, let’s be honest, anytime we see an “old pal” that’s still posting, we say, “Thank God” they’re still alive.”  So now I’m posting some under Ovarian, Peritoneal and Esophageal links.   So far, so good, for both of us.  God has given me His peace, and like you, we take life literally one day at a time.  So once more, it’s good to know you’re still here, and will be able to share your own personal “post-op hernia” experience with “slpmom”. 

 Like William always likes to say, “We’re just one beggar telling another beggar where to find a piece of bread.”  You’ve already been where her husband is going.  And that’s what you’re doing—giving “slpmom” a piece of bread.  And man is she ever hungry for a “morsel” of hope.

 May God continue to give you and Tammy many more years together.

 Loretta

Wife of William Marshall, EC Stage III (T3N1M0) - (MIE) @ UPMC – May 17, 2003 by Dr. James D. Luketich

 

Hello Loretta & William

Loretta, it’s good to hear from but I’m sorry to hear of all you’ve been through, I’m sure William is the best caregiver possible.  Please let William know I said hello and that I wish the two of you the best.  I hope the small crumb of info that I have to offer slpmom is of some hepl and look forward to hearing that things are improving for them.

On my end things have been stable since the stage 4 recurrence back in October 0f 2011.  A few bumps in the road such as the hernia and multiple bouts of pneumonia due to aspirating in my sleep but  like you I’m still here. 

Best regards,

Joel

 

paul61

Joel C said:

Hello Loretta & William

Loretta, it’s good to hear from but I’m sorry to hear of all you’ve been through, I’m sure William is the best caregiver possible.  Please let William know I said hello and that I wish the two of you the best.  I hope the small crumb of info that I have to offer slpmom is of some hepl and look forward to hearing that things are improving for them.

On my end things have been stable since the stage 4 recurrence back in October 0f 2011.  A few bumps in the road such as the hernia and multiple bouts of pneumonia due to aspirating in my sleep but  like you I’m still here. 

Best regards,

Joel

 

It is great to see your post

Joel,

It is great to see your post again! It seems like it has been a long time since I have seen a post from you here. I do see your posts from time to time on “Smart Patients” I am glad to hear things are going as well as they are. I have my issues with middle of the night reflux as well. So far no pneumonia “knock on wood” but it is frightening to wake up coughing with a burning throat. I always worry about the damage that might do but I have annual endoscopies and so far no bad news.

It is nice to see some of the “old timers” post here again.

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Five Year Survivor

 

slpmom

You are all awesome

You are all so awesome and yet my heart breaks for all that you have endured or are enduring. How cruel this life can be to all of us and yet to see such incredible human spirit is truly inspiring. I never did get to speak to any doctors, despite numerous messages to numerous people...no one would give me information or call me...they kept talking to my loopy huband who couldn't remember half of it. They discharged my husband home saying it was a "surgical issue" and I would have to call the surgeon. So I did and we have an appointment first thing Monday morning. No one seems to think this is as urgent as I do. So my husband sits here with his bowel in his chest, not able to talk much because he can't take a full deep breath, there is still some pneumonia in his lung, he is tired, weak, can barely eat, and still in pain despite some of the strongest narcotics I have ever seen.  And yet, we keep trying to put on foot in front of the other.

paul61

slpmom said:

You are all awesome

You are all so awesome and yet my heart breaks for all that you have endured or are enduring. How cruel this life can be to all of us and yet to see such incredible human spirit is truly inspiring. I never did get to speak to any doctors, despite numerous messages to numerous people...no one would give me information or call me...they kept talking to my loopy huband who couldn't remember half of it. They discharged my husband home saying it was a "surgical issue" and I would have to call the surgeon. So I did and we have an appointment first thing Monday morning. No one seems to think this is as urgent as I do. So my husband sits here with his bowel in his chest, not able to talk much because he can't take a full deep breath, there is still some pneumonia in his lung, he is tired, weak, can barely eat, and still in pain despite some of the strongest narcotics I have ever seen.  And yet, we keep trying to put on foot in front of the other.

You and your husband continue to be in my prayers

I am so sorry that you and your husband find yourself in this situation. It sometimes seems like the pace of medical intervention moves at a snale's pace when someone you love is suffering. I sometimes think that people in the medical profession see so much pain that they have difficulty understanding the sense of urgency we have to get things moving. Your husband is very fortunate to have you as his advocate.

I am glad that you have an appointment on Monday. Hopefully you can help your husband’s surgeon understand the urgency of the situation. Unfortunately herniation through the diaphragm is not an uncommon complication of this particular surgery. I will say though, that of the three cases that I am aware of over the last three years, all of the surgical repairs have been successful.

I know this is going to be a long weekend but I pray for comfort and peace for your husband and a plan to address your husband’s issues on Monday that includes a quick and successful surgery.

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Five Year Survivor

 

Joel C

paul61 said:

It is great to see your post

Joel,

It is great to see your post again! It seems like it has been a long time since I have seen a post from you here. I do see your posts from time to time on “Smart Patients” I am glad to hear things are going as well as they are. I have my issues with middle of the night reflux as well. So far no pneumonia “knock on wood” but it is frightening to wake up coughing with a burning throat. I always worry about the damage that might do but I have annual endoscopies and so far no bad news.

It is nice to see some of the “old timers” post here again.

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Five Year Survivor

 

Long time Paul.

Hello Paul, it’s great to hear from you too.  It’s so nice to touch base again with you, Loretta & William.  I have to admit Paul when we first met around five years ago I never thought we would make it this far.  Yeah the reflux is scary stuff.  Are you doing anything for follow up at this point (scans)?  I had a scan in October and when they tried to schedule the next on for April I opted out.  If something changes significantly I may change my mind but in the meantime I’m going to try to limit my exposer to radiation.  Stay well Paul and I look forward to hearing more from you.

paul61

Joel C said:

Long time Paul.

Hello Paul, it’s great to hear from you too.  It’s so nice to touch base again with you, Loretta & William.  I have to admit Paul when we first met around five years ago I never thought we would make it this far.  Yeah the reflux is scary stuff.  Are you doing anything for follow up at this point (scans)?  I had a scan in October and when they tried to schedule the next on for April I opted out.  If something changes significantly I may change my mind but in the meantime I’m going to try to limit my exposer to radiation.  Stay well Paul and I look forward to hearing more from you.

I am on an annual exam with my oncologist with chest xRay

Joel,

I agree; I am amazed and thankful, we are still here. Once I passed the 5 year mark my oncologist moved me from six month exams with annual CT scans to yearly exams with just a chest xRay and endoscopy. I have the impression, from what I have read here, that many insurance companies will not approve PET scans and some will not approve CT scans if you are past three years with no recurrence or significant symptoms that require follow up. Like you, I am fine with that. My body does not like the contrast solution they have you drink with a CT scan so I am happy to avoid that.

I just had my six year endoscopy last Wednesday so waiting for the biopsy results, but my GI doctor said "everything looks fine" so I am hopeful the biopsys results will be fine as well. 

Hope you continue to feel well,

Best Regards,

Paul

 

LorettaMarshall

slpmom said:

You are all awesome

You are all so awesome and yet my heart breaks for all that you have endured or are enduring. How cruel this life can be to all of us and yet to see such incredible human spirit is truly inspiring. I never did get to speak to any doctors, despite numerous messages to numerous people...no one would give me information or call me...they kept talking to my loopy huband who couldn't remember half of it. They discharged my husband home saying it was a "surgical issue" and I would have to call the surgeon. So I did and we have an appointment first thing Monday morning. No one seems to think this is as urgent as I do. So my husband sits here with his bowel in his chest, not able to talk much because he can't take a full deep breath, there is still some pneumonia in his lung, he is tired, weak, can barely eat, and still in pain despite some of the strongest narcotics I have ever seen.  And yet, we keep trying to put on foot in front of the other.

"slpmom"-Patient's rights & Disability benefits info for You!

Dear “slpmom”

We can all see readily see that you are a distraught caregiver here who is physically exhausted and your heart is broken.  Each of us have suffered difficulties that enable us to “feel your pain” in the sense that we’ve faced incidents that we could not control.  Yet my husband and I didn’t have the difficulties you’ve had and are still having.  You know that your husband is not getting enough attention by the hospital to which he was admitted.  Now he has been “sent home” to suffer.  By what you have told us you have every right to be upset.

Nevertheless, I am not a doctor, nor a nurse, nor a counselor, and I don’t want anyone “flagging” this letter as “offensive” when I reference God as a source of strength for me.  My faith empowers me to live “above” the circumstances (most of the time) instead of “under” them . So thank you for your kind words for each of us.  You might say Paul, Joel, William and I have been “pen pals” for quite a few years.  We each have unique experiences that enable us to speak from the heart and help others who are suffering. 

When I speak of God and Heaven, that doesn’t mean I am trying to convert or convince others to believe as I do, but this forum is supposed to be about caring for one another.  My strength and my peace come from God.  Others can speak for themselves, but when I last checked, freedom to believe in God was still a choice.  Sometimes that means, trying to put myself in another person’s shoes, conversing with—comforting them—and at times giving them a “cyber hug” and praying for them.

Having been a caregiver to my husband, I know how each day can be full of surprises, and that “R” word for recurrence is always a possibility.  So we never take a day for granted anymore.  And for that reason we want to be certain that our doctors are “on our side” so we can feel like they are our partner, not just a physician.  Some doctors have a good bedside manner, and some don’t.  Pardon me but it looks like you and your husband have been thrown under the bed!  And I will tell you that I started this letter last night, and I was so angry that I said to myself, “I had better ‘sleep on this’.”  And so I have started over, and am still mad about the circumstances under which your husband has been SENT HOME TO SUFFER!

The information provided below may be helpful to you in the future, albeit a bit late on this occasion.  I know that hospital discharges can be challenged, because I have done so. (I’ve elaborated on that in my “P.S.”)  Your husband’s age and kind of insurance will dictate his benefits of course, but if you can find any more time in your day, you might want to familiarize yourself with these “patient’s rights.”   

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1.  http://patients.about.com/od/atthehospital/fl/How-to-Fight-Your-Hospital-Discharge.

“…Appealing Hospital Discharge Decisions

Your hospital, doctor, or Medicare health plan will inform you of your planned date of discharge. If you think you are not ready to leave the hospital, tell your doctor and the hospital staff immediately about your concerns. Ask your doctor to advocate for your interests. Sometimes hospitals and health plans pressure doctors to arrange quick discharges.

You should request an appeal if your concerns about early discharge are not resolved. You can stay in the hospital and Medicare will continue to cover your stay as long as you file the appeal before you are discharged. Once you appeal, you will not have to pay for the services you receive during the appeal (except for charges like copays and deductibles).

It is best to file your appeal on or just before the planned date of discharge. Ask for an "Immediate Review." Your representative, such as a legal agent or family member, can file an appeal on your behalf…”

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How I wish there was something I could do to help you.  How I wish I could have been by your side when you were told your husband is well enough to go home!  I agree with you, he is in no shape to be discharged!  He is extremely ill, and there is nothing that you can do for him at home. 

All I can say is that personally, I am enraged.  To me, to discharge your husband indicates pure disregard for his welfare.  You and I both agree he is too sick to be sent home.  And I hope that on Monday, you will get some much needed attention—ON MONDAY—NOT A DAY LATER—NOR A WEEK LATER!   Now, please don’t let anybody PUSH YOU AROUND ON MONDAY.  IF THIS WERE MY HUSBAND, I would have objected to his discharge and I hope you did.  Obviously, you, as his wife, are in a legal position to make decisions for your husband, are you not?  Moreover, I would be “taking notes and taking names” of people to whom I had talked or called that did not return my calls, or did not try to intercede on my behalf.  Yes, you can be treated like a number that has no name!  And there have been times when caregivers like you could not get the office to set up appointments on a timely basis.  I remember once a lady called to say that her husband was having difficulties after his Esophagectomy.  The receptionist disregarded her pleas and said, “We’ll check on that when he comes in for his regular appointment!”  So it happens that sometimes the office staff thinks they should intercede for the doctor.  I’m sorry to say, you’ve got to be your own advocate. 

Based on what you say, and I have no reason to disbelieve you, your husband is under heavy sedation and not mentally alert enough to make decisions for himself.  He is incapable of comprehending the seriousness of his condition and understanding anything the doctor is saying.  Moreover, he is in a pitiful condition—one that you should not be trying to care for at home. 

You’ve already told us about your trying to hold life and limb together—holding down a regular job in order to pay the bills—and then running over to the hospital at the end of the day—only to find no one there that will tell you about what care has been given to your husband during the day.  Give me a break!  And I know that by the time you get there, no doubt the night nurses are on duty, and they can only read the computer notes to see what was done “TO or FOR” your husband.  And basically, they are reduced to giving pills and have to call the doctor in order to do anything you think needs to be done to help your husband.  They are definitely overworked so I’m not complaining about the nurses.  They can’t do anything more than what is written on your husband’s chart by the attending physician.  Now you’re supposed to be a nurse on the night shift!  You’re “on call” 24 hours a day with no relief.  I know you’ve shed many a tear over this and it’s okay to cry.  It is a release.  I cry when I’m happy and I cry when I’m sad and mad!

You also say that you have to continue to go to work because your husband works on a contractual basis, and when he isn’t working, there is no paycheck coming in.   I don’t know anything about applying for disability, but I have noted here from time to time that the question is asked.  Paul61 keeps a close check on this link and he might be able to steer you in the right direction.  There are instances where EC patients are qualified to receive disability funds until they were able to return to work.  Here is a link that could be helpful.  I’ve copied a portion of the contents from this Social Security page.  I think your husband should have no difficulty in qualifying.

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2.  https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022155

Effective Dates: 10/24/2008 - Present

“DI 23022.155 Esophageal Cancer

 

COMPASSIONATE ALLOWANCE INFORMATION
ESOPHAGEAL CANCER
DESCRIPTION	Esophageal cancer originates from the lining of the esophagus and presents as either squamous cell carcinoma (cancer that begins in flat cells lining the esophagus) or adenocarcinoma (cancer that begins in cells that make and release mucus and other fluids). Esophageal cancer spreads extensively through the esophagus and often extends far beyond the edges of the primary tumor (distant metastases). The cancer generally presents as an obstruction to swallowing with complaints of difficulty swallowing.
ALTERNATE NAMES	Adenocarcinoma of the Esophagus, Squamous cell carcinoma of the Esophagus
DIAGNOSTIC TESTING AND CODING	The definitive test for esophageal cancer is esophagoscopy with visualization of the cancer and biopsy. Testing used to determine the causes of symptoms include a barium swallow (esophagram) generally done with a series of x-rays of the esophagus, esophagoscopy (also called endoscopy) testing that examines the inside of the esophagus using a thin lighted tube called an endoscope and a biopsy. Testing used to determine whether the cancer has spread includes a CT (CAT) scan of the chest, abdomen and pelvis, a PET scan, a bone scan and a bronchoscopy.
TREATMENT	Historically, treatment of esophageal cancer has been surgery. Recent multimodality therapy with radiation, chemotherapy and surgery has begun to play a major role in treatment.
PROGRESSION	The prognosis for esophageal cancer is not good regardless of the treatment employed. When esophageal cancer is found very early, there is a better chance of recovery. Esophageal cancer is often in an advanced stage when it is diagnosed. At later stages, esophageal cancer can be treated but rarely can be cured…”

 Monday can’t get here soon enough.  Help can’t get here soon enough.  Both you and your husband have suffered enough.  Do you have anyone that can go with you to the next doctor’s appointment? You could sure use an “advocate.”  I hope the doctors have “got their act together on Monday”, and that you will be “tough” if they try to put you off.  Now I know that Pneumonia could well play into the timing for surgery.  The surgeon has been home from his vacation long enough to have already performed the surgery.  After all, some surgeries are more urgent than others, and if he was that busy, could he not have called in an associate with expertise in that field that could attend to your husband’s needs?   If this isn’t an emergency, then what is?  Once more all I can say is I’m sorry that you have been “put off” and made to watch your husband suffer in this way.  An old saying certainly applies here, “It’s enough to make a grown man cry.”  (As well as a woman)

Praying & hoping for the best,

Loretta

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P.S.  This is lengthy, yet a condensed version of my experience “challenging my sister’s scheduled discharge” from a local hospital.  Back in February of 2012, my totally-invalid, mentally-retarded, wheelchair bound, sister who was also an epileptic, age 69, was admitted to the hospital with a serious infection that required intravenous antibiotics.  Three days later, although the infection had not cleared up, the nurse notified me that my sister was going to be discharged, because a pill form of the antibiotic could be given at home.   At the time, I was in charge of making medical decisions for my sister and my mother.  Mom was recuperating from a broken hip and paying for nurses for her own care at home. (Home health care LPNs were coming in daily to care for my sister, but not full time.)  I couldn’t believe they were going to discharge my sister before the infection was under control.  I said, “There is no way my sister is going to go home.  My mother is 98, and she can’t care for my sister.”  Then I asked to speak to the doctor. 

The doctor explained the hospital rules, and said there was nothing more they could do for my sister, Lucy, since there was no justification for her continued stay in the hospital.   I said, “What would you do if this were your sister?”  The doctor was speechless.  She had no answer.  Now she was nice, but indicated that those were the rules she had to follow.  She told me that I could file a grievance and contest the discharge, which I promptly did.  But this had to be done the day before the discharge date.  I was given a form and a phone number to call and make my protest known.  This I did.  Heretofore, I didn’t know about the ability to file a grievance against a discharge.  I doubt that you knew that either.  If you had, it would have taken at least a couple more days to receive a “rendering” from hospital administrators.  That potentially could have meant a few more days in the hospital while a decision was reached. 

The final outcome was that they had to make arrangements for my sister to be transferred to a reputable rehab facility for continued treatment and monitoring.  So they gave me a list of about 15 nursing facilities and I had to choose one.  I knew nothing about the quality of any of the homes, but was given a day to make a choice.  So I chose one and made an appointment to meet with a representative who would come to the hospital to evaluate my sister’s needs.  So the next day, the rep came to discuss my sister’s needs.  We made arrangements for my sister to be transferred the following day.  All along I wasn’t happy and knew my sister would be better off right where she was in the hospital.  But I had exhausted my options and so I signed the papers. 

But God had other plans.  The morning that my sister was to be discharged and transferred to a rehab facility, the doctors called me in for a conference.  My sister had begun to run an extremely high fever.  This meant that they could not discharge her.  Now at that time my sister had begun to have seizures about every 15 minutes, and they were giving her medication, but it wasn’t sufficient to stop them. (She was first diagnosed with Grand Mal Epilepsy at age 5.)  This story could go on, but after my conversation with the doctors they explained my sister had taken a turn for the worse.  The doctors explained the possibility that in her present condition, death could be imminent.  I said, “How long do you think she might have?”  He said, “We’re not God, but I would say possibly within the next 24 hours.”

Knowing my sister’s physical and mental condition, and her inability to ever get well from all her problems, I made the decision to not make any heroic measures to try to keep her alive.  It was a harrowing 16-day stay.  My sister had been taking Omeprazole (Nexium) for years, and had Barrett’s Esophagus.  She often had dilations to stretch her Esophagus.  She would sometimes choke on her food and aspirate.  The doctor had made an accurate prediction.  Nineteen hours later, in the wee morning hours of February 29, 2012, (Leap Year), God intervened.  The Death Certificate read, “Pneumonic Aspiration”.

Knowing all the things that my sister had suffered during her 69 years on Earth, including Breast Cancer, I said, “Thank You Lord”, for taking my sister home to be with YOU.  Her years of suffering are finally over.  Now it was my job to go home and tell my mom that Lucy had gone to be with the Lord.  Mom broke into tears, sobbed and said, “My work on earth is done.” 

Mom was a devoted Christian mother who vowed to take care of my sister at home as long as she was physically able.  She never wanted to put Lucy in a home.  With the help of the Lord, she did just that. It’s often said God answers prayer in 3 ways—YES—NO or WAIT.  Just when it looked like my sister would have to be put in a home, God sent His “Rescue Squad” of angels and carried Lucy to her heavenly home.  Sickness stops at Heaven’s door.  There will be no “haggling with doctors”—no rehab homes there—no mentally ill—no Barrett’s Esophagus—no Breast Cancer—no Esophageal Cancer—no cancer of any kind—no wheelchairs—no handicapped parking places for the disabled.  Best of all there will be no more tears in Heaven.  God will wipe them all away. In November of 2013, angels came to carry my Mom to Heaven at age 99.  I miss both of them but one day I will see them again—all in God’s time. 

 

One last note—it’s okay to ask God why, but we can’t demand an answer.  We will never understand all the “whys?” in this lifetime.  While I was making preparations for my sister’s funeral, I was asked if I wanted to make a donation to the Lions Club Eye Bank.  I had to make a quick decision.  I thought why not?  If the corneas of her eyes could be used to help another person to see, then what a lasting legacy for a person who seemingly possessed little to give in life.  It wasn’t long before I received a notice that her corneas were in excellent condition and were used to perform corneal transplants on two different people.  So at the same time Lucy’s life ended, her gift enabled two other people to “look at life through a new lense!”  Imagine that.

3.  https://www.nlm.nih.gov/medlineplus/ency/imagepages/8783.htm

"Home → Medical Encyclopedia → Before and after corneal surgery

Overview - Corneal surgery involves replacing the clear covering of the eye (cornea). The surgery is recommended for severe corneal infection, injury, scarring, and for corneas that no longer allow light to pass through. The outcome for corneal surgery is usually very good and transplanted corneas have a long life expectancy. - Update Date 9/2/2014 - Updated by: Franklin W. Lusby, MD, ophthalmologist, Lusby Vision Institute, La Jolla, CA. Also reviewed by David Zieve, MD, MHA, Isla Ogilvie, PhD, and the A.D.A.M. Editorial team. "

 

 

 

 

LorettaMarshall

"slpmom"- Today's MONDAY-hope U R getting some help today!

Hello “slpmom”

It’s me again.  Just wanted you to know that we are definitely praying for you today.  That includes Joel and Paul as well I am sure. You are on my mind.  My husband and I remember the dark days of diagnosis, treatment, surgery and recovery.  That was traumatic enough, but we didn't have the "after problems" that your husband is having.  The Ivor Lewis surgery itself is the most invasive type of surgery.  So that was enough to be recovering from.  In addition to that, if someone has to have post-op chemo as did Paul, I say they are in "double trouble" because it takes longer for the incisions to heal.  The chemo is NOT a piece of cake.  So hopefully relief will soon be on its way for ya’ll.  (I’m a Southerner. J )

There is a "new normal" for EC patients that finally make it through the fiery ordeal known as Esophageal Cancer. I’ll be glad when the two of you get to that stage.  I always said, “When my husband has cancer, I have cancer!”  And when you love one another deeply, what hurts them, hurts you.  You’re in a tough place today, and I pray help is on the way.   And as I noted in my previous letter to you, it would serve you well to check into and apply for disability for your husband.

Prayerfully,

Loretta

 

paul61

LorettaMarshall said:

"slpmom"- Today's MONDAY-hope U R getting some help today!

Hello “slpmom”

It’s me again.  Just wanted you to know that we are definitely praying for you today.  That includes Joel and Paul as well I am sure. You are on my mind.  My husband and I remember the dark days of diagnosis, treatment, surgery and recovery.  That was traumatic enough, but we didn't have the "after problems" that your husband is having.  The Ivor Lewis surgery itself is the most invasive type of surgery.  So that was enough to be recovering from.  In addition to that, if someone has to have post-op chemo as did Paul, I say they are in "double trouble" because it takes longer for the incisions to heal.  The chemo is NOT a piece of cake.  So hopefully relief will soon be on its way for ya’ll.  (I’m a Southerner. J )

There is a "new normal" for EC patients that finally make it through the fiery ordeal known as Esophageal Cancer. I’ll be glad when the two of you get to that stage.  I always said, “When my husband has cancer, I have cancer!”  And when you love one another deeply, what hurts them, hurts you.  You’re in a tough place today, and I pray help is on the way.   And as I noted in my previous letter to you, it would serve you well to check into and apply for disability for your husband.

Prayerfully,

Loretta

 

"SLPMOM" I echo Loretta's comments you are in our prayers today

I hope your appointment with your husband’s surgeon resulted in a plan to address your husband’s surgical issues and an immediate plan to reduce his discomfort and pain. You have been on my mind today and in my prayers.

Wishing the best for both of you, and hoping for good news for your husband.

Best Regards,

 

Paul

 

slpmom

Sorry it has been so long - update

Well its been a few weeks since I've been on here and I must say I am overwhelmed by the generosity of spirit and all the prayers and well-wishes! It is heart warming to know there are others out there rooting for us! Since discharge, we have talked to the surgeon, seen another surgeon for a second opinion and seen the pulmologist. I did verbally protest the discharge but my husband kept saying "I want to go home" so we did. We got control of most of the pain with very very strong meds. The two surgeons (from different practices and hospitals) are saying don't have surgery - yes, that's right, they say it is too risky. We were floored. The first surgeon did not give us a lot of detail but said many patients have refused to be "re-opened" and they have followed their progress and they have done OK. The second surgeon was younger and gave us a lot more info - he  said that adhesions form within a week or two when organs "move around" in the body and that if they went in an tried to "pull" the bowel loops back down and they were stuck to something, it would involve getting the thoracic surgeon to open him back up fully which would also put the heart and lungs at risk. It could go from a small surgery to a big surgery really fast. Given that he is only 6 months post-op, this surgeon recommended waiting at least a year, if not forever. He recognizes that the bowel is in a bad place and anything could happen (twisted, blocked..) - but he said surgery could result in severe complications. He also said there would be a lot of scar tissue for them to go through making laparascopic repair unlikely. The pulmonologist said there is not much that can be done except try different inhalers to keep the inflammation down (my husband is now like someone with COPD - constant thick mucous and couging a LOT). The mucous is the body's way of trying to protect itself from all the bile aspirations. The bowel is in front of the lower lung and he can't even get a good view of the lung on Xray he said. This is why my husband cant take a deep breath and coughs so much. You know, we go around thinking we will fix this, fix that and when someone tells you they can't fix it, it is shocking - my husband says its not the cancer that will kill him, its  the after effects of the treatment. He is of course very depressed. I keep encouraging him but I too am now feeling the waves of depression. His quality of life has gone so downhile so fast...the only good thing is that he can actually still eat, fairly normally (for an esophagectomy patient that is). We cannot apply for disability yet because we don't have our green cards yet - we are not american citizens unfortunatly. I thank everyone so much for all the information advice and prayers. And Loretta, the story of your sister and Mom is heartwrenching!! I will continue to advocate and fight for my husband's health!!

paul61

slpmom said:

Sorry it has been so long - update

Well its been a few weeks since I've been on here and I must say I am overwhelmed by the generosity of spirit and all the prayers and well-wishes! It is heart warming to know there are others out there rooting for us! Since discharge, we have talked to the surgeon, seen another surgeon for a second opinion and seen the pulmologist. I did verbally protest the discharge but my husband kept saying "I want to go home" so we did. We got control of most of the pain with very very strong meds. The two surgeons (from different practices and hospitals) are saying don't have surgery - yes, that's right, they say it is too risky. We were floored. The first surgeon did not give us a lot of detail but said many patients have refused to be "re-opened" and they have followed their progress and they have done OK. The second surgeon was younger and gave us a lot more info - he  said that adhesions form within a week or two when organs "move around" in the body and that if they went in an tried to "pull" the bowel loops back down and they were stuck to something, it would involve getting the thoracic surgeon to open him back up fully which would also put the heart and lungs at risk. It could go from a small surgery to a big surgery really fast. Given that he is only 6 months post-op, this surgeon recommended waiting at least a year, if not forever. He recognizes that the bowel is in a bad place and anything could happen (twisted, blocked..) - but he said surgery could result in severe complications. He also said there would be a lot of scar tissue for them to go through making laparascopic repair unlikely. The pulmonologist said there is not much that can be done except try different inhalers to keep the inflammation down (my husband is now like someone with COPD - constant thick mucous and couging a LOT). The mucous is the body's way of trying to protect itself from all the bile aspirations. The bowel is in front of the lower lung and he can't even get a good view of the lung on Xray he said. This is why my husband cant take a deep breath and coughs so much. You know, we go around thinking we will fix this, fix that and when someone tells you they can't fix it, it is shocking - my husband says its not the cancer that will kill him, its  the after effects of the treatment. He is of course very depressed. I keep encouraging him but I too am now feeling the waves of depression. His quality of life has gone so downhile so fast...the only good thing is that he can actually still eat, fairly normally (for an esophagectomy patient that is). We cannot apply for disability yet because we don't have our green cards yet - we are not american citizens unfortunatly. I thank everyone so much for all the information advice and prayers. And Loretta, the story of your sister and Mom is heartwrenching!! I will continue to advocate and fight for my husband's health!!

I am so very sorry to hear this news

I am so very sorry to hear that you and your husband did not get a more positive plan to address his current issues. I have to wonder what their plan is to address the pain he is experiencing? If the plan is to continue to use the pain medications they are currently prescribing, I would be concerned about his ability to return to work, and I know that was a priority for both of you. It is difficult to believe there is not something they can do to make him more comfortable.

I hope it will not be too long before the two of you can qualify for some kind of financial assistance. I am sure it is difficult to not give in to the frustration and depression of continuing challenges and bad news.

Your husband is fortunate to have you as an advocate during this difficult time.

Thank You for providing an update.

 You both continue to be in my prayers.

Best Regards,

Paul Adams
McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Five Year Survivor

 

LorettaMarshall

slpmom said:

Sorry it has been so long - update

Well its been a few weeks since I've been on here and I must say I am overwhelmed by the generosity of spirit and all the prayers and well-wishes! It is heart warming to know there are others out there rooting for us! Since discharge, we have talked to the surgeon, seen another surgeon for a second opinion and seen the pulmologist. I did verbally protest the discharge but my husband kept saying "I want to go home" so we did. We got control of most of the pain with very very strong meds. The two surgeons (from different practices and hospitals) are saying don't have surgery - yes, that's right, they say it is too risky. We were floored. The first surgeon did not give us a lot of detail but said many patients have refused to be "re-opened" and they have followed their progress and they have done OK. The second surgeon was younger and gave us a lot more info - he  said that adhesions form within a week or two when organs "move around" in the body and that if they went in an tried to "pull" the bowel loops back down and they were stuck to something, it would involve getting the thoracic surgeon to open him back up fully which would also put the heart and lungs at risk. It could go from a small surgery to a big surgery really fast. Given that he is only 6 months post-op, this surgeon recommended waiting at least a year, if not forever. He recognizes that the bowel is in a bad place and anything could happen (twisted, blocked..) - but he said surgery could result in severe complications. He also said there would be a lot of scar tissue for them to go through making laparascopic repair unlikely. The pulmonologist said there is not much that can be done except try different inhalers to keep the inflammation down (my husband is now like someone with COPD - constant thick mucous and couging a LOT). The mucous is the body's way of trying to protect itself from all the bile aspirations. The bowel is in front of the lower lung and he can't even get a good view of the lung on Xray he said. This is why my husband cant take a deep breath and coughs so much. You know, we go around thinking we will fix this, fix that and when someone tells you they can't fix it, it is shocking - my husband says its not the cancer that will kill him, its  the after effects of the treatment. He is of course very depressed. I keep encouraging him but I too am now feeling the waves of depression. His quality of life has gone so downhile so fast...the only good thing is that he can actually still eat, fairly normally (for an esophagectomy patient that is). We cannot apply for disability yet because we don't have our green cards yet - we are not american citizens unfortunatly. I thank everyone so much for all the information advice and prayers. And Loretta, the story of your sister and Mom is heartwrenching!! I will continue to advocate and fight for my husband's health!!

slpmom~Your update is anything but what we wanted to hear!

Hello again,

Just want you to know that I, for one, am totally disappointed in what the doctors have told you.  Your husband can’t continue to live in his present state of misery and discomfort either.  Yes, scar tissue makes repeated surgeries more complicated, but I, although am not a doctor, would try to find some surgeon that would “take the risk” of trying to do “something.”  As for me, when I was first diagnosed with Peritoneal Carcinomatosis, I had exploratory surgery.  It was then that cancer was also found in my ovaries.  Then I went back home and did chemotherapy.  At that point, tumors were reduced to an operable level.  But I would want to find someone that would at least take a “look inside” instead of “guessing” about what might happen. 

Although tonight, I have plans that will prohibit me from writing a “book”, I will get back with you.  I just wanted you to know that we’ve been wondering about you, and now that we’ve heard, I for one, am most unhappy about the advice you have been given so far!

I am certain that Joel and Paul won’t be any more satisfied than am I.  I am sorry that you don’t live here because I think you would get much better care.  We often converse with other patients from other countries that cannot get their doctors to perform surgeries that would be considered “ordinary” reparative surgeries here. 

Am so sorry, but will be back in touch.  Thanks for the update although it’s not what any of us wanted to hear.

Prayerfully,

Loretta

 

 

slpmom

Thanks so much for your kind replies

I never even thought of asking for exploratory surgery..what a good idea! I'm going to ask about that...thanks so much for the kind replies! It really helps. Oh and Loretta - we do live in the US but we are Canadian! We live in Atlanta! And the doctors we have seen are supposed to be "the best". One of the surgeons we consulted was chief of surgery at one of the major hospitals. That's another reason why we were taken aback - we thought if anyone would/could fix this, they could.  

Joel C

slpmom said:

Thanks so much for your kind replies

I never even thought of asking for exploratory surgery..what a good idea! I'm going to ask about that...thanks so much for the kind replies! It really helps. Oh and Loretta - we do live in the US but we are Canadian! We live in Atlanta! And the doctors we have seen are supposed to be "the best". One of the surgeons we consulted was chief of surgery at one of the major hospitals. That's another reason why we were taken aback - we thought if anyone would/could fix this, they could.  

L, I’m so sorry to hear what

L, I’m so sorry to hear what you guys are going through.  I agree 100% with Loretta that your husband cannot live like that.  All I can say is my situation was exactly like you husbands other than I was 3 years out from my MIE (and maybe that’s the difference) but the symptoms were the same.  I was also told that the surgery was a big deal and as I mention above the recovery was really rough but I could not go on the way I was.  I’m sure your husband is very depressed, I know I was.  When my surgeon started to drag his feet on the surgery I told him that “I would rather die on the table than continue to live like this”.  At that point he knew I was not playing, and I wasn’t.  Ya, your husband’s situation is that rough and I sincerely sympathize with him but there can be life after this, you just need to take a shot at getting it fixed.  I wish you both the best.

slpmom

Update on herniated bowel situation
I thought I would update all rather than PM you guys. My husband finally had his surgery to repair the herniated l yesterday. It went well I guess in that they were able to do it laparoscopically. They did not have to put in a mesh. But it was much worse than they thought because instead of "three bowel loops" the CT report had said, over half the small bowel was in his chest. The surgeon was shocked. but now we have another problem in that he is not getting good pain control. I think he was so tolerant to the opioids he uses that when they gave him pain meds it didn't even make a dent. I'm talking the kind of pain where you barely move and you don't talk and you are almost delirious. Tonight they installed a patient controlled pain pump so I'm hoping this helps. It's so hard to see our loved ones in that kind of pain. When I think of what he's been through....I have no idea if this amount of pain is normal after this surgery but I'm hoping when he gets through it he will have a better QOL. I am thinking of all of you and praying you are finding strength in every day.