Everybody hurts

Everybody hurts sometimes, but no one should ever have to suffer the way Bill did physically, emotionally and mentally because of ignorance, ineptitude and a too-cautious “wait and see” attitude on the part of his surgeon.

If I can spare any person the pain and indignity he went through and the pain his loved ones are still going through, this post will be worth the hurt it causes to write it. Please remember I am not a doctor.

Today I picked up copies of my step-dad’s death certificate; the causes of death were listed as cardiopulmonary disease of “minutes” duration and bowel obstruction of “unknown” duration. We weren’t sure what it would say.

We are sure that the ER doctor did a CT scan immediately Dec. 29, diagnosed a bowel obstruction immediately and called a surgeon immediately. That part went right.

Everything else went wrong.

We don’t know for sure why Bill developed the adhesions that strangled 12-inches of his small intestine, causing the blockage and dead bowel syndrome. He’d never had surgery or an injury, which are usually what cause adhesions. He had, however, been on coumadin (Warfarin) for three years for atrial fibrillation, a heart condition which makes you at risk for dead bowel syndrome – one of the places you can throw a clot is to the intestines. Rare, but it happens. So rare that everyone worries about strokes or heart attacks with atrial fibrillation, but most people aren’t even aware the other could happen.

But a clot wouldn’t explain the adhesions that choked off 12 inches of small intestine, so we suspect the coumadin had caused abdominal bleeding, which in turn caused the adhesions. Again, we’ll never know for sure.

What John and I know is that we were told by the ER doctor that Bill would need surgery quickly, but since this small facility didn’t do surgery on weekends, it would have to wait until Monday – which was already stretching it. On Monday, the surgeon decided to wait and see if the obstruction would resolve. I begged, pleaded and bullied for days, but no one wanted to touch him because his atrial fibrillation made him a surgical risk.

Since his condition was a death sentence – the window of opportunity for a positive outcome is small, and 9-12 hours or so is optimal – our thinking was “do the damn surgery NOW!” According to an online Merck Manual for Patients and Caregivers, if blood flow to part of the intestines is cut off for 10-12 hours, that part of the intestines dies, and so do 70 to 90 percent of people who are operated on after dead bowel syndrome occurs.

Bill’s surgery wasn’t done until Jan. 9, and that was after I threatened the surgeon the evening of Jan. 8 with taking Bill to UAMS the next morning. By then, Bill had gangrene, necrosis and an abdomen filled with 2 liters of blood. He was on the verge of rupture and his prognosis for survival was grim.

If he’d had the surgery sooner, would he still be here? Hard to say, because he had the presenting symptoms of dead bowel that first night. But he wouldn’t have been left to suffer and develop severe delirium.

Presenting symptoms, according to Merck are:

Severe abdominal pain, usually sudden, but only slightly tender to the touch at first. “Pain out of proportion to tenderness is an important clue for the doctor. Later, as the intestine starts to die, the person’s abdomen becomes tender to the touch.”

In the wee hours of the night of Jan. 10, I was able to get into two online emergency-room-protocol manuals. One was specific for geriatric care. Today I am blocked from them, so I can’t quote, but from memory, I can tell you that they said patients present writhing with pain, usually with an oval area of abdominal tenderness, which Bill had. They also stressed the pain would seem greatly out of proportion to the symptoms and doctors should immediately suspect bowel obstruction or dead bowel and that immediate surgery is protocol.

Again, I am not a doctor. I’m just sharing what happened to us in hopes of preventing it from happening to others. Please read up on bowel obstructions in the elderly – don’t just take it from me. You need to know. Things happen fast.

And then it’s too late.

Mother and Bill in a healthier, happier time

Mother and Bill in a healthier, happier time

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18 thoughts on “Everybody hurts

  1. Just read your post. Even after living it, I still can’t believe it really happened. The ‘what if’s’ are driving me crazy. Thanks for putting it out here for people to learn from. Maybe it will save some family the heartache we’re feeling.

  2. Laura, I really DO ,feel your pain. the “what ifs” made me crazy mad; for a LONG time.I wanted to sue, but got no support from family. I know it would not bring him back! I wanted it NEVER to happen…AGAIN!!!! The suffering; was unbearable to watch.TIME, will help you; but it will NEVER undo the damage! Thinking of you and yours, Love Jan

  3. My heart breaks for you / for us / for everybody who has endured such pain! 4 weeks ago on Saturday morning (3 a.m. Ish) my mom woke me up in excruciating pain. I took her to the E.R. – An x-ray was done and she was told she was “constipated”! Yes constipated! And after an enema type procedure we were sent home! By Sunday morning she could not bear it any more and we went back to the E.R. – This time she was sent to ICU and an AMAZING surgeon took her to the operating room to see what was going on inside. By this time her intestines were 90% gone and she had gangrene in her colon. There was nothing the surgeon could do but sew her back up and bring us the devastating news!!! She passed away at 4:27 a.m. that Tuesday morning! I, like you, am posting this to GET THE WORD OUT! If you suspect something seriously wrong with someone – go with your gut! I keep reliving the “what if’s” – what if that doctor on Saturday night had of done more than an x-ray (a ct scan? Called a surgeon in? What if he had not of sent us home with “constipation” – Even if it had not of made a difference in her life or death situation – she would not have been sent back home for another 32 hours of excruciating pain! My heart is broken!!!! (And my prayers are with you and your family!)

    • I am so, so sorry to hear that. I’m glad your mother was spared a longer-term ordeal like we had, but what a horrible thing to have happen. Heartbreaking. You’re the second person to tell me a similar story. And you’re so right we need to get the story out to everyone. It happens much more often than people know.

      Thinking of you, and my deepest condolences.

      • Thank you Laura – All we can do is pray for each other and keep on keeping on! (As we get our stories out to as many people as we can!). No family should have to go thru this!

      • I just reposted this one on Facebook and Twitter and asked people to share it. I may come back and do a more medical version, too. I used to write health and fitness/wellness articles for our statewide newspaper. Might be time to put that hat back on as a volunteer.

        My best to your family.

  4. Thank you for telling this story. I’ve been in atrial fib for about 20 years, and have never heard of this possibility. I’m so sorry for your family.

  5. Dear God…this is exactly what killed the love of my life of 27 years…the surgeons also took a wait and see attitude and she coded the next 24 hours from dehydration and septic shock…her entire intestinal tract was black when the surgeon finally went in. Dear Lord, I pray no one has to ever go through this again…my poor babies last hours on this planet where filled with pain and suffering and I can only hope she is in a paradise now.

  6. My Dad died last year of this “Dead Bowel Syndrome”. He presented in the ER with abdominal pain and they did exploratory surgery and he came out of surgery on life support and he died the next day. He was only 63. From the moment he went to the ER the doctors acted sketchy like they didn’t know what to do with my Dad and foul play has been suspected.

  7. I am going through this at the moment. Had 3 previous laparotomies. Now, 4 months later I woke up with sudden excruciating pain. Went to hospital. They started draining blood from my abdominal cavity and saw bowel wall thickening due to ischemia but don’t want to do surgery because of complications with previous laparotomy. Must wait and see on Monday when they do a scan again. In the mean time I’m in constant pain and draining bloody fluid of at least 100ml a day via pigtail.

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