PLEASE HELP!!!

Hello Everyone,  My son"s story is very tragic and I need advice.  My son was 24 years old and diagnosed with severe UC last Novmeber.  He was given Asacol and the medication relieved the symptoms.  He followed his diet strictly and was a healthy, physically active young man who worked part time, went to college part time, worked out at the gym every day and participated in hockey, soccer and baseball teams.  In March he felt great following his diet and stopped the Asacol.  Towards the end of May he began to develope some UC symptoms and went back on the Asacol.  A week later he was in the hospital and diagnosed with C-diff and UC flare. He was discharged 6 days later on 40mg of prednisone and 800mg of Asacol 3 x's daily and the remaining days of Vancomycin for c-diff.  This did not relieve the symptoms and he was readmitted and for the following 5 weeks was treated with 40 to 60 mg of Prednisone daily, Remicade infusions and then Cyclosporin. The stopped the Asacol as it made him nauseous and would vomit,  He had several colonoscopies indicating severe UC and repeat C-diff tests which were negative.   Finally on July 2nd he was told he needed a total colectomy. This was performed on July 5 and the stoma was at his naval and completely successful.  He was on a liquid diet the following day and the second day after surgery the resident told us he could eat whatever he wanted as his stoma was working. He was given eggs and toast for breakfast, chicken sandwhich for lunch and chicken, potatoes with broccoli for dinner  (he didn't touch the dinner). The third day after surgery he became nauseous (no vomiting ) and severe cramps which continued through the following day and night.  He was given gas-x and Metamucil and also an obstruction series on the 4th day following surgery. For the next 12 hours he was severely nauseous and cramping, meds for pain and nausea were given, and sometime after midnight he had an NG tube placed into his stomach to start draining the stomach.   By the morning he was in critical condition and in ICU.  He had vomited during the night, aspirating stomach and bowel content into his lungs. A second surgery was done that night to remove the blockage and within 3 days our son was placed on a ventilator for severe aspiration pneumonia and within a week his conditioned worsend to full blown ARDS(acure repiratory distress syndrome)   He was completely sedated from July 13 until August 23 after which his condition became more life threatening and was then placed on a heart/lung machine or Ecmo as it is called. Our son passed away on September 13th at the age of 24 from multiple organ failure.  PLEASE tell me if anyone has ever heard of something happening like this.  How soon after colectomy surgery can you eat solid foods? Is this just a risk of a surgical procedure?  What could I have done to prevent this...we were with him constantly.  Does anyone have any information, suggestion or advice for me as I am desperate.       

I am so sorry for your loss. Please do not blame yourself. Perhaps the best people who could answer this are people who have had surgery, whether they had problems or no problems. Have you posted your story on the Ostomy Forum?

There are a few people on this forum that have had surgery but most here are non-surgical people. I don't know if you would be able to get any answers from a doctor, they might be wary of being asked to find fault with one of their own or you yourself might not accept what they say.

I know you would like to find some answers but I hope you will take the blame off of yourselves. You did everything you could.

It's shocking to read what happened to your son. I'm wondering where he received treatment because it does sound like mistakes were made in his case, going back to March when, you write, his UC med was discontinued after he seemed to reach remission. As for the solid food brought to him soon after colectomy at the hospital, I witnessed something similar after an emergency appendectomy performed on a friend's young-adult daughter.
(The hospital staff brought her a hamburger the day following her surgery!) It sounds like you need to consult with a medical oversight agency in your area to determine whether malpractice or negligence applies in your son's case. Wishing you strength at this sorrowful time in your life. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)

This is not your fault and there was nothing you could have done. I'm so sorry to hear about what happened. I also think you should probably post on the ostomy forum. From what you wrote here it kind of sounds like some mistakes might have happened but then we weren't there and it is possible that due to all the stress maybe you didn't remember events exactly as they happened. All doctors treat a little differently too as even though there is a general protocol, doctors have a lot of leeway in how to treat their patients. You could contact an attorney and maybe they have a way of figuring out if there was actually any malpractice or not. My family went through the death of my 19 year old stepson 3 years ago (didn't have anything to do with UC) and my wife kept blaming herself. I guess it is a parents natural instinct to think that there was something more they could have done but the truth is if your number is pulled, sometimes it was just their time. I know that is hard to accept sometimes. My heart goes out to you.

Post Edited (garylouisville) : 9/21/2012 6:05:30 AM (GMT-6)

I am so sorry for your loss.

I am so so sorry to hear of your loss. This is very heartbreaking! I can only imagine what it means to lose a child.

I have not heard of anything like this either. :(

I'm so sorry for your loss.  I have a 17 year old daughter having stomach issues.  I was so sad reading your post.

Greg

Post Edited (I need help) : 9/21/2012 1:40:21 PM (GMT-6)

 Extremely sorry to here this.,I feel for you.
My son 21 at the time of colectomy,had ng tube in until the 3rd day post colectomy,on the 3rd day they pulled the NG tube and the spinal anesthic. I guess they also fed him food. Well that night I was there,
he started to scream around 8,his abdomen was heaving from the small intestine waking up more, or it was the ileus making the intestine spasm,looked like a scene from Aliens.
They immediatly replaced the NG tube,and increased the morphine pump. He had a severe ileus,with gas in the bowel,finally after 6 more days the intestine/stoma started to work. They disconneced the NG tube from the vaccum but let it stay in for 3 more days,finally he pulled it himself.
When the intestine started to work,he was could only eat ice,for the first day,then one ounce of tea or so per hour,then one ounce of broth or so. After it was proved the intestine would work then he started very very slowly on limited solid foods. Took 30 plus days pre surgery to finally get out.
They really dont know what will happen to the small intestine after it fully wakes up. My son was also on TPN at the same time,that is how he was able to go with solid food for the first 3 days post colectomy.
This is because he was in such bad shape when he went in.
I am recalling this from 12 years ago,as well as I remember. I do know that I had never seen anything like it, and it was a really bad night for everyone,including the nurses.
I was a maniac raising hell with everybody,surgeons,residents,gi doc's,admin.
I can't of course advise on legal matters,but the above is my story.
Again sorry about your son.
Old Mike

Post Edited (Old Mike) : 9/21/2012 3:41:36 PM (GMT-6)

I know that 'sorry' won't help you at all. I understand what you are going through. I've had several doctors mistreat my family members and they died unexpectedly.

Perhaps not everyone on the boards know, but c-diff can be very dangerous to people who have IBD. Recently there was a study that showed IBD patients have a higher rate of dying from c-diff.

But that does not mean that was the reason. I'm not a doctor, or a professional researcher. Anything could have caused your sons death. I strongly agree with what imagardener2 wrote. Find the information, do the research, find professional help, and don't let this slip through the cracks.
Your son shouldn't have died like this. He shouldn't have suffered like he did also. Find anything you can about what happened.