Madison. Stat. (repost)

I am reposting this mainly as a reminder to myself of what can happen to me. Also, to kick me in the arse to schedule overdue procedures and exams.

Sunday night, Easter Sunday night to be exact, a gift came to me in the form of the onset of a small bowel obstruction. The effects of which began to develop that night while I was sleeping and intensified throughout the day Monday.

Said effects included severe stabbing abdominal pain, abdominal distension and nausea. Basically, my small bowel shut down and obstruction was not allowing anything to pass through me. Therefore, vomiting was the only way to relieve the pain and nausea. Which came in many waves as the day wore on.

Around 5:30 p.m. I could not take it anymore. I called my mom to ask if she could come down to me. I did not think I should be alone in this condition. She agreed and immediately began the one and a half hour journey to her ailing son.

She arrived to the sight of me doubled up in pain. Curled up in the fetal position.

She leaned down to give me a hug. Her presence and her touch was blessing and then some. God, I needed her. Thank you so much for coming to me mom.

She and I talked about what should be done. After a phone conversation with the on call gastroenterologist at the UW Hospital in Madison, we decided it was a must that I go to an emergency room to be looked at. It made the most sense to go to the UW Hospital. As all of my doctors and records are there.

We were more than a tad concerned about making the two hour drive to Madison. With how bad I was feeling, the drive had the potential to be hard on me. I decided that it was worth the risk. I packed up a few things and we loaded my carcass into the car.

The drive was actually not too bad. We arrived at the emergency room. A relief.

I exited the car and made my way through the emergency entrance sliding doors. Pain, nausea and anxiety amplifying with every step. As I approached the woman at the front desk I was consumed with concern over how things would play out with my lack of health insurance. That and the obvious health aspects.

I gave all the necessary information. All that was going on in my body and mind was so overwhelming. Somehow, I held it together and followed the nurse into the bowels of Emergencyland.

The nurse led me to the room where my case would be evaluated and diagnosed. I sat on the bed waiting for what lied ahead. A situation I have known more than a few times in the past.

I heard a faint knock through the white noise fog in my mind. A nurse walked in. Now it began. The series of nurses, doctors, questions, answers, needles, vials, medications, etc, etc, etc.

I’m going to let my mom’s notes take over. After that point, everything became even more of a blur. My photos, which can be seen above, will do the rest of the speaking for me. I am having a bit of a time finding the words now. I also need to get some work done on other projects. Thank you for your interest.

And once again, thank you mom. Love you.

UW Hospital – April 25-28

  • Todd arrived at the Emergency Room about 11:00 p.m. with nausea and severe abdominal pain.  He was given morphine and medicine for nausea.  Along with these, the nurse brought in a large glass of prep to drink – contrast for a CT scan.  After drinking a few sips, Todd vomited.  The nurse gave Todd more nausea medicine, and eventually Todd was able to drink the required liquid.
  • Based on the CT scan, the diagnosis was a high-grade bowel obstruction.  No contrast was able to get past the obstruction.  The bowel was dilated above the blockage and decompressed below the blockage.  The doctors said that Todd had a twisted bowel, which could be caused by adhesions (scar tissue) or by a desmoid tumor.  They told Todd that it was not from anything he ate or from anything that he had done.  They said that the obstruction was not located at the point where the small intestine is attached to the rectum.  It was in the middle of the small intestine in the same area as the desmoid tumor near Todd’s ureter.
  • An NG tube was inserted into Todd’s nose, down into his stomach to suck the gastric fluids out.
  • Doctors said there were two ways to go:

1. Wait a couple of days to see if the obstruction resolved on its own.

2. Do surgery right away to relieve the obstruction, as there could be a danger that the bowel would get twisted on itself and the intestine could die.

  • After consulting with the surgical team, the decision was made to wait a couple of days and rest the bowel.  Hopefully, doing that would relieve the symptoms and the bowel would readjust itself.  This decision was based on several things: Todd’s heart rate was getting better than when he was first admitted.  Todd’s pain improved somewhat after the NG tube relieved some of the pressure.  His abdomen was not as severely tender, indicating no peritonitis.  His white blood cell count was elevated, but that could be from the bowel being compromised.
  • Todd was admitted to the hospital and arrived in his room at 4:30 a.m.
  • There was confusion and contradictory ideas about treatment because not much is know about treatment of desmoid tumors.  The team of doctors that came in the first morning still seemed to be leaning towards surgery.
  • We were relieved and happy when Dr. Harms, Todd’s previous surgeon, came in shortly after noon.  He said that he would be in charge of Todd’s case from then on, because he knew Todd’s situation and his body.  He said that the other doctors didn’t know so much about desmoid tumors.
  • Dr. Harms said that he wanted to avoid surgery, because surgeries can exasperate desmoid tumors and cause them to grow.  However, he said that Todd might need surgery some time in the future.  He said the likelihood of an obstruction happening again was high.
  • When asked if surgery might help the desmoid tumor near his ureter so that he wouldn’t need to have a stent, Dr. Harms said that if they couldn’t do anything with the desmoid tumor at the time of Todd’s previous surgery, they couldn’t do anything now.
  • Dr. Harms said that he felt the obstruction could be from food that Todd ate.  He may want to put Todd on a diet.
  • Dr. Harms wants Todd to work with the Oncology Section again.  He said that possibly they would go with a more aggressive treatment for the desmoids.
  • Gabrielle Rocque, MD from the Oncology Section visited with Todd several times.  She was very understanding regarding the frustrating issues Todd has, especially with the treatment of desmoid tumors.  She mentioned possible chemotherapy, not oral medicine.  She said they would probably introduce one medicine at a time.  She would be working with Dr. Bailey regarding Todd’s case.  Dr. Bailey was presently out of the country, so she would be consulting with him when he returns.  During a later visit she told Todd that they would probably start with oral medication.
  • Todd’s condition improved and he passed some gas and stools by Wednesday April 27, so the NG tube was removed, and he was put on a clear liquid diet.  Everything went well with that, so he was given a full liquid diet Thursday morning.
  • The team of doctors that came in Thursday morning said that Todd would be in the hospital until at least Friday because of the size of the obstruction.  However, by mid morning he was told that he could go home after he discussed his diet with someone and talked to a pharmacist.
  • He was put on a soft, low fiber/low residue diet.  Dr. Harms will schedule a follow-up appointment for an MRI in June or July.  The Oncology Section will follow-up with Todd after the MRI.
  • We went to pick up Todd’s pain medicine at the UW Pharmacy, and left the hospital about 12:30.  We stopped at the store on the way to pick up the proper foods.


One Comment

  1. Lisa
    Posted 20 Dec ’11 at 9:47 pm | Permalink

    I’ve read this account a couple of times, and each time I read it, I feel as though I’m there. Having had a Desmoid, I know the fear they can invoke.
    Desmoid tumors are horrible beasts …. they are destructive and debilitating. Thankfully, you had a surgeon who knew something about them.
    I’m so sorry you struggle with this. I am so sad that more research isn’t being done; if not to come up with a cure, then AT LEAST some sort of plan so that they can’t run wild and destroy various parts of our bodies.
    Thank you for posting this and sharing yourself in such a personal way. I wish you peace and healing along your journey.

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