Tuesday, April 22, 2014

Small Bowel Obstruction

Last Monday night, I started having pain similar to the bowel kink or obstruction I may have had in February.  I started vomiting around 3:00 am on Tuesday morning and felt awful by the time I needed to get up for work.  At my appointment in February, my doctor said next time it happens, go get a kidney, ureter, bowel (KUB) x-ray.  At 8:00 am on Tuesday morning I went into City MD, an urgent care facility. They took me in right away and after getting a short medical history, x-rayed me.  While I was waiting for the technicians to get set up, I vomited again.  After it was done, the doctor said that I needed to go to the emergency room.  He sent me off with a note saying small bowel obstruction and a CD with the x-ray.  I went to New York Presbyterian (NYP) Hospital, which is where my primary care physician is affiliated.  I got checked in and filled out the paperwork by mid-morning on Tuesday.

I have not been in an emergency room for a problem since I was 12 years old and fell off a fence and broke my arm. I was stunned by the ER at NYP Hospital.  It was so crowded that the patient areas were all full and patients were lined up on beds in the hallways, basically head to foot on gurneys.  My gurney was in the hallway, where they drew blood and put in an IV with a saline drip and asked me more questions.  I was still having a lot of abdominal pain.  They poked around my abdomen and thought that I might have appendicitis since I was feeling more pain on the right side.  In addition, my white blood cell count was 17.9 (10 is the top of the range). They also took a urine sample.  Next was a CT scan of the abdomen and pelvis.  It took about 3 hours to get in to have the scan and another hour or so after that to get the results.  By this time it was mid-afternoon and I was feeling a little better.  The CT scan showed a high grade small bowel obstruction.  At least I didn’t have appendicitis!  They assigned me to a surgical team, which scared me to death.   I did not want another operation.  The surgical team consisted of about 5 surgical residents who told me that I would not be discharged until the obstruction cleared and I passed gas.  They said that they would put in a NG tube if I was vomiting and would need to do an emergency surgery should the obstruction not clear.  They seemed very interested in doing this surgery, a bit overenthusiastic in my opinion.   I’m positive none of them had ever seen a carcinoid cancer patient.   I suggested that perhaps I could go home and come back if I felt worse but they were having none of that.  Meanwhile the hospital was full and there were no beds to admit me to so I was stuck in the hallway on a gurney for the night.  I was miserable and uncomfortable. There were too many patients, I had no privacy and there was one bathroom for about 30 people, most of whom were quite ill.  The ER was short of everything – no pillows, no blankets, and no IV poles, I couldn’t even watch TV, since I was stuck in a hallway.  The ER is way in the back of an old hospital so there was very sporadic cell phone service.  If I wanted to go to the bathroom, I had to carry my IV bag since there was no pole!  Meanwhile I passed gas at around 11:00 pm so I knew that I was out of the woods on the bowel obstruction and on my way to getting better.  In the morning, the surgical residents came back again, said my abdomen felt nice and soft and if I could keep a liquid breakfast down, I could go home.  They did another round of blood tests and my white cell count was down to 6.2 – perfectly normal.  They came back around 11:30 am to check again and to put together the discharge.  It took another 3 hours to get it all together and release me.  I was home around 3:00 pm on Wednesday.  What a nightmare!

I asked one of the nurses why it was so crowded and there were no rooms available in the hospital.  She said that because it was the first 2 days of Passover, many of the Jewish doctors were off and told their patients to go to the ER if they had a medical problem.  Note to self: never get sick on Passover!

Needless to say, I am very uncomfortable with how my bowel is healing after this surgery.  I’m not sure what to do to avoid these types of obstructions and I definitely don’t want another surgery.  In hindsight, I probably would have been fine not going to the ER as the obstruction cleared up on its own.  At least my doctors now have the KUB and CT scan to evaluate my situation.  I’ll see what they suggest when I go for my next appointment in early May. Given this ER experience, I would definitely want to wait it out if it happened again. 

Meanwhile, I felt that the emergency room was a very good example of what is wrong with the medical system in America.  Not only was it overcrowded and understaffed, it did not even have enough supplies or bathrooms to handle the crowd.  Most of the patients were very old – I guess that’s typical for any hospital.  One woman was at least 90 years old and was complaining constantly and loudly.  She was not upset about her medical condition - mostly she wanted her glasses or her bag or where was lunch?  The patient next to her said that she had kept her up all night with the noise. I asked a staff member what her story was and they said that her home health care aide quit and that was why she was in the ER!  That is crazy!  The place is overcrowded with patients - eldercare needs to be handled somewhere else!  Another patient came in around 1:00 am as I was still sitting on my gurney in the hallway.  She was at least 90+ years old and was presenting with pneumonia.  Her son, who was of Medicare age himself was with her.  She had been transferred from her nursing home to the ER.  The doctor was trying to get some medical information and to put in an IV and she was screaming, kicking, spitting and telling him that she wanted to die and to leave her alone!  Her son was yelling at her and telling her the doctor was trying to help her.  This went on for about a half an hour.  It’s amazing to me that you can’t die when you are in your 90’s and close to death anyway. A much younger man came in early on Wednesday morning. He reminded me of kids in their 20’s who don’t believe they need insurance because they will never be sick. He was presenting with something called Exertional Rhabdomyolysis, which is kidney damage from excess exercising.  He had taken a class called “soulcycle” and the doctor that was treating him said he treats this condition about 20x a month.  The man had never heard of it and thought that there should be some sort of public education about the risks of excessive exercising.  He was admitted right about the time I was getting discharged. An old man across from me was 83 and had fallen and broken his hip and was on his way to a hip replacement surgery – his medical history was quite long but the most interesting thing I heard was that he had an 11 year old daughter – how crazy is that?  There is absolutely no privacy for anyone when you are sitting in the hallway listening to patients that are sitting 3-5 feet away from you!  Amazing.  I hope I never have to go to the ER again!

Sunday, April 13, 2014

Adventures with CREON

I am now 7 months past my debulking surgery.  I went back to work in December and my life settled back in a routine.  My diet went back to my more typical “normal” in that I ate healthy, lower fat meals during the week when my day was pretty structured.   But on weekends, I was indulging in restaurant eating with fattier foods. This led to gastrointestinal problems like gas and diarrhea which sometimes extended into Monday or Tuesday. This problem can be caused by having a shorter bowel from surgery or from the Sandostatin LAR that is administered monthly.  In my case, since I didn’t have any diarrhea problems prior to surgery, it is probably due to the surgery.  My body is just not absorbing fats properly. 

I tried Digest Gold, an over the counter digestive enzyme supplement, for a few months and I thought it was working a little bit, at least on the gas problem.  I was keeping a journal of my symptoms and found that I was still having diarrhea for about 3 days a week, sometimes more than 5 -10 times a day, almost always on some variation of Friday – Monday.  Last month my doctor prescribed CREON, a prescription digestive enzyme replacement.  CREON is a medication used to treat people who cannot digest food normally because their pancreas does not make enough enzymes such as lipase, protease and amylase.  I started CREON, at a low dose (6,000 lipase units) and I was to take it 3 times a day before meals.  I made the mistake of starting this drug on the day before my birthday. By the third pill I was having extreme gastrointestinal pain. I felt like I was having heartburn from my esophagus to my urethra.  I was also very bloated and constipated.  I ended the day drinking prune juice to get things moving again.  I was still feeling under the weather on my birthday and had to cancel our dinner reservations.  I recovered in time to have a nice dinner at Palma, a little Italian place in the Village later in the week. Though I was feeling better, I was no longer interested in taking this drug.  I asked my fellow carcinoids on ACOR if anyone had side effects from CREON. The general advice was to take it once a day, get used to it and then balance the dosage to alleviate the diarrhea without getting constipated. 
I started taking it once a day during the week, when I eat less fat and twice a day on weekends when my eating is less disciplined and includes more fatty foods.  After 4 weeks this strategy has worked to lessen, not eliminate the diarrhea problem.    Sometimes I forget to take the pill and sometimes I have diarrhea despite not eating fatty foods or taking the pill. I would say that incidence is much lower and I don’t have to spend my weekends close to a bathroom.  So, after a bit of trial and error, this drug seems to be working on one of the digestive issues that has been plaguing me after surgery. I think this is progress!

On a related note, I had never been on prescription drugs before except for occasional antibiotics that don’t have to be renewed.  I am currently taking prescription vitamin D due to a deficiency (lab test 14, range 20 – 50).  I am also taking CREON, both prescriptions that need to be renewed regularly.  I get my prescriptions from Walgreens and they have me on what I would call “robocalls” reminding me to renew or pick up my prescriptions in the next 24 hours or lose the prescription.  More often than not, my voicemail messages are from the drug store…I find this quite annoying. I wish there was a better way to communicate with my pharmacist.