Trying To Deal With Sick Family Member As Well As My Own Issues

[marysue]

Hi All:

I’m going to use this space to vent a little bit.  I’ve had a frustrating month.  I postponed my spring/early summer BCG to give my body and mind a chance to rest, recover and reset.  Unfortunately, this month has been extremely trying.  My third son (I have 4) was recently diagnosed with complex diverticulitis.  He is currently on his second hospital stay.  His issues of severe abdominal pain started in mid June when he came back from his vacation in Vancouver.  At first our GP thought it was a stomach bug and my son thought it was something that he ate while travelling.  He went to the ED and they did an xray which showed that he was severely constipated and recommended Restorolax.  He took that for a week and got things moving well but the abdominal pain didn’t abate. So I took him to another ED, the Rockyview where I go for my urology stuff.  The ED doctor did another xray plus an abdominal CT scan which showed the problem and recommended that he be admitted for IV antibiotics.  The trouble was that the Rockyview had no beds nor a general surgeon available for consult so they wanted to transfer him to our newest hospital called South Health Campus.  He arrived at the Rockyview ED about 1:30PM in the afternoon.  It was almost midnight before he got his IV antibiotics.  They put in a request for an ambulance to transfer him to South Health Campus where there was a bed and a surgeon for consultation.  He waited all night in a chair wrapped up in a blanket until the ambulance finally came for him at 7AM. There were no ambulances available prior to that.  He was taken to SHC and remained there for the next 10 days.  They gave him IV antibiotics for 4 days and then switched him to oral antibiotics which didn’t work and the infection flared again so he was put back on IV antibiotics.  Finally the infection seemed to be on the wane so he was given a different oral antibiotic and released.  Well, he lasted about a week and now the infection has flared again and he is back in hospital on IV antibiotics. The frustrating part right now is the confusing information we are getting from different doctors.  They thought that they would do a drainage procedure since the antibiotics didn’t work but the radiologist who would do the procedure has said that the abscesses are too small for drainage.  So my son  and us sit in limbo and has not been given any information about next steps.  I have told him not to leave without a solid treatment plan. Antibiotics alone are not working. He is 6 feet tall and should weigh about 165-170 pounds.  His current weight as of yesterday is 122.5 pounds.  My poor boy is absolutely skeletal and I’m worried that any more weight loss will affect his heart and kidneys.

The main frustration is the acute staffing shortages in the Alberta Health Care System.  I know other provinces deal with this too but I’m thinking we have to be once of the worst places to be if you are sick.

If anyone has any suggestions I’d appreciate it.  Please send me some hugs.  I need them today.

[Nightingale]

Hi Marysue,

Let me begin by sending you lots of hugs!  Gosh, I cannot imagine what you’re going through, with having to deal with your own bladder cancer issues, and now becoming in a sense a caregiver for your son.  Is there an option to get an opinion from outside your municipality?  I don’t know how far you are from the bigger cities (Calgary & Edmonton), but could it be arranged to get an assessment from a hospital in one of those centres.  Perhaps your family doctor can arrange for it?

Please take care of your own health my friend, and I am wishing your son recovers from his illness.  Sending you much love and healing thoughts!

My very best to you and your family!

[Joe]

Hi Marysue,

I am sorry to hear that your son and you having been through challenges in dealing with diverticulitis.   I hope a solution is found soon.  Thank you for posting. I have learned a lot because of your posting.  I don’t know if it will help and perhaps you are already very familiar with diverticulitis so it may be redundant, but anyway, below are webinars you may find relevant.  Wish your son’s quick recovery.

1. Diverticulitis update by Cleveland Clinic.

At 11:20  Dr. Leon talks about managing acute diverticulitis and in-patient

At 12:13   Dr. Leon listed in-patient treatment, in which she states that if abscess is greater than 4 cm, perform percutaneous drainage.

At 12: 45  Dr. Leone talks about types of antibiotics used to treat Diverticulitis for out patients and in patients.

At 13:00  Diet, short term and long term are mentioned.

But, Dr. Leon did not get into the situation that abscess is too small to drain but anti-biotics do not seem to work.

At 23:00  Dr. Trunzo talks about surgery and titled the talk ” Is it all science or an art?” He says 3 options for complicated diverticulitis, 1.  Elective surgery, 2, Nonoperative therapy, and 3 Emergent surgery.

“www.youtube.com/watch?v=CpFMJdCsov4”

2.  Coping with Diverticulitis – A patient’s story

The patient was been treated at UCLA hospital. ULCLA is one of top university in the US.  Doctors at UCLA could not figure out why antibodies could not heal the patient’s condition and told the patient the need for full colectomy, which would have required her to use external bag.    Then the patient had a second opinion at another hospital in  Santa Monica, California.   Dr. Tracy Childs is a board certified colon and rectal surgery, and she is chief in surgery.   She uses laparoscopic and robotic surgery for benign and malignant condition.  Dr. Childs and the patient spent about a week, working with an infectious disease doctor, and reached the consensus that the surgery was the best way to go, and the patient had a resection of sigmoid section of the colon, but did require full colectomy and the patient did not have to use the external bag.   At 20:30,  the recovery phases were explained, a patient who was standing up just 8 hours after colon resection by robotic assisted laparoscopic surgery.   Now, this is in the US, and the patient was a producer of a well known talk show, so she had a connection to pull some string to get to become a patient of Dr. Childs.    The message from Dr. Childs is that don’t be afraid if surgery became necessary.  Any surgeon should be able to handle it but preferably by a doctor with training on colon and rectal surgery.

“www.youtube.com/watch?v=jvYebramSV8”

 

[marysue]

Hi Nightingale and Joe:

Many thanks for your kind words of support.  And Joe, thanks for the Youtube links and info.  I will check that out later today.  My son remains in hospital here in Calgary. He is now under the care of a colorectal specialist who is calling in an infection specialist for consult.  John has not responded to the IV antibiotics very well this time.  Yesterday he underwent a CT scan with contrast and it showed no change or improvement in his condition. His bloodwork shows that his white blood cell count has actually gone up a bit so that too, tells us that the IV antibiotics are not working as they should. Two radiologists have said that the diverticulitis is not accessible enough to do a drainage with a catheter so some kind of surgery is the most likely option.  Bowel resection is the very last resort because my son is still very young at age 33.

We are waiting for the colorectal specialist to come see our son today and will hopefully be able to converse via speakerphone and get info from him as to what the plan will be.

As an aside Nightingale – the health care system in Alberta is in deep crisis.  We have a dire shortage of every type of doctor.  Our GP just told us to go to the ED because there was nothing he could do for our son.  He could do a referral to a specialist but going through a GP takes weeks if not months. It is a stupid system. When in crisis in Calgary it is better to go straight to the ED at one of our hospitals.  You get seen by a specialist much faster this way. Unfortunately because GPs no longer have hospital privileges they are just gatekeepers for our health, not the main health care provider any longer.  This is another reason there is so much pressure on our EDs.  Thanks again for the support and kind words.  It means the world to me.  ((((HUGS))))

 

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