I’m a mom with amazing son who was diagnosed with UC at the age of 11. Our story with the hopes of preventing the same thing happening to anyone else.
I am putting our son’s story out there has a warning to parents/anyone who has UC and seeks treatment. It’s is a bit lengthy but PLEASE READ.
My Son Was Treated Awfully Bad
Our son (12 years old now) was diagnosed last year with having Ulcerative Colitis.
Had a couple bouts with bloody stool 4 months apart. We made an appointment with a GI doctor at Nationwide Childrens Hospital, Columbus, Ohio. My son was seen and told that even though he was not having issues at the time that he possibly could have Crohn’s or UC. And, that now that we were established we should just call if we ever saw blood again and they would scope him.
Well it did happen and we took our son to be scoped and was told he had pancolitis. That he looked like raw hamburger and started him on steroids..sent him home. Well things got worse so we called and voiced our concerns and took him back to the hospital where he was admitted. He did not respond to iv steroids but they did not try anything else. At this point he was getting worse, vomiting and losing more weight.
We were told that he was too bad to try any medicine but Remicade and that we were to never let a flare go and that they could not let it go beyond 6-7 days. So we decided to try Remicade hoping that we would find something else in future. It worked immediately…it was so great, but we knew that some build up an immunity after time so we started researching. Was very interested in things like Fecal Transplants but our doctors were not keen on listening to any of that. Didn’t know much about it etc.
Well 9 months later our son now 12 says to us on a Sunday I have a little blood in my stool and he was only 4 weeks out from his last Remicade. So on Monday I called and told them. They said to watch to make sure it was not a bug. The problem with Childrens Hospital too is we always had to see this one that was a fellow then the doctor. Well, she said she would order blood-work. So I drove our son to get bloodwork. Called about bloodwork found out Sed rate was elevated but they still wanted to wait. I knew to keep him hydrated and was pushing fluid and starting drinks like pedisure etc.
At this point he is starting to get worse. I call again and she tells me to get a stool sample from him and more blood-work. So I take him again and they tell me I have to have special containers to collect stool. So I get those and get the sample and drive up again the next day. Sediment rate up more and no other signs of anything. We are now getting to 4th of July weekend. I call a dr that I read about who had just done a study at Children’s hospital in Michigan to ask about fecal transplant study and tell him about our son. He told me to ask for the remicade antibody test. So I called and asked. They tell me it cost too much and they don’t usually do that. I said I don’t care what it cost I would like to have it done. I also tell them my son is getting worse now throwing up and not eating…losing weight. They told me not to weigh him everyday(the fellow) but that too I could bring him to the ER but they wouldn’t do much more than I could do for him as it was a holiday weekend.
So long story short, he got worse and I took him to ER and they did xray and admitted him. They put him on IV fluids.
This time they did not try steriods or anything. I kept insisting on remicade antibody test and found out insurance would cover all of it. Then they agreed to do it. It was overnighted. Our son is getting worse and worse…I keep asking about results being told they were not back yet and they just wanted to make sure he didn’t have a bug. I am like no this is a flare and I was told not to let a flare go more than 6-7 days and this has now been two weeks…he is down about 20-21 lbs and I am concerned he has not had any nutrition. They said if he can drink 4 cans of insure a day that will do it. Come on he is throwing up and putting blood out constantly. He is on the toilet more than in his bed in so much pain it killed us. My husband and I never let his sight his entire stay…sleeping in his rm. It was so awful….the residents would come in and poke him in belly asking if it hurt, then the fellow then the dr. It was pathetic. He was so miserable but not a complainer which made us feel even worse. The pain was so bad one time a resident asked if she could see his belly and he said could you please not push on it and she was clearly upset and shook the side of the bed and asked him if that hurt. We complained but nothing got done.
They start giving him morphine in the IV in the bathroom every 2 hrs and then Oxycodone. Well I noticed when they weighed him that he was starting to gain weight but nothing had changed as far as IV or eating…he was still eating nothing. Heart had been racing off and on. He was starting to take sodium on the tongue and I daily would ask about nutrition and they said if he can drink those 4 cans…I said he clearly hasn’t and can’t so I want some thing done.
They then asked a nephrologist to come in and he said why don’t they have him on TPN…I said what is that. He said total nutrician. So I asked about it and was told they would rather he get the nutrician through absorption in his stomach. I said he can’t then they NG tubed him. The next day I ask about why he is gaining wt and looking puffy…they had not even caught that. I asked for a belly measurement and that is when the ball started to roll, 9 days into hospital stay. Besides the weeks leading up that they didn’t want him to come in. A different Dr was on and she took one look and the next thing we know the ICU team is working on our son. Our son was whisked into surgery with a toxic mega colon. We were told by surgeon that has been operating 40 years he had seen one other and the patient came in that way. The doctor and anesthesiologist told us they would do their best but our son was very serious and may not make it.
He was in surgery a little over 4 hrs with his colon removed, the doctor left a little end piece for possible future J pouch. We were in ICU several days as he was on a vent. Left there too soon to go to surgery floor..rn tried to get them to let him stay. Ended up back having 5 drain tubes put in due to infection. The piece they left was leaking in to cavity from the top. Then he got a hospital infection pseudomonas. If things could go wrong they did.
We had some great nurses but we had a couple of nurse practitioners that were terrible. He was so heavily medicated with pain medicine that he started having some anxiety…not what I would call terrible due to everything he was going through. Being taken to xray so many times…..having dye put in and then having a reaction afterwards with a spiking fever. He would not kick scream or anything he would just cry if they said we are going to take you for this or that test. All we could think of is how much he had been through. I kept telling them that I was medicine sensitive and that might be it. They had him on TPN at this point. It come time to take one of the tubes out and he is scared and asks if they can give him something they tell him it will be nothing. At this the nurse practioner grabs it and pulls it out and he lets out a little yell and she rolls her eyes.
I wish you knew this child he is so laid back and compliant so it had to have felt bad. Then later it is time to start weening off TPN and I was told by one of the surgeons that it is hard to eat because the brain is being told it is full and it will take time. Well the nurse practioner said to him you are doing terrible at eating and you are going to be here alot longer until you eat. Which now he is upset with himself and tells us he is sorry he is trying. Mind you we had him up to eating 1500 calories at this time and I told her he doesn’t each too much more than that at home when he is active. I also reminded her of what the surgeon had told us and asked her if she had ever been on TPN. I am so upset thinking all the pain and suffering he has been through and he is sorry. Oh and after they took him off most pain meds most of the anxiety went away. Later too when they come to take the rectal tube out my husband asks that nurse practioner named Amy if she is going to give him anything and she said yes she want to make her job easier. Now I know no one has to take our word for it but it did happen and we are fortunate to have had many visitors that witnessed alot of this. At this point we are afraid to say too much as we don’t want it taken out on our son either. Needless to say 38 days later we come home with one drain tube left and our son excels in progress at home. We go back to get last tube out and the interventional radiologist takes it out carefully clamping it and pulling it slowly and I told her how the nurse practioner took it out and she said that had to hurt as there is a wire in there and you have to do it the way she showed me. Oh also they got mad when he said that the rectal tube hurt his leg when he walked and they nurse practioner said that it shouldn’t to get up and walk. Well we then looked at it as it was stiched to his leg and it was hanging the stitches were loose and it was laying up against the stitches away from leg. We had to ace bandage it. Also we had been begging to atleast try Humira to stop the flare and then we would work on where we would go from there knowing all along we would maybe come to the point of having the colon removed but knew we wanted him to be going into surgery electively and healthy as I have a nurse friend who had done it.
Anyway what our whole point is be a patient advocate…I know that we would not have our son today had I not asked for a measurement because I thought he looked bigger. We were very blessed to have stayed with him and watched for things. There is so much more that could be told but it is way to long now. We even went to the director of patient relations a month ago to tell her our story and said we didn’t want this happening to any other kids as we have researched and found numerous mistakes made and no kid should be treated by a nurse practioner that way. Our kid is easy going…can’t imagine no parent and a rough kid what happens.
We were told it would be investigated and we would receive a call in 2 wks along with a copy of his records with no charge. Leaving that office I said I know unfortunately how things work with a big well known named hospital, even a small one for that matter. Everyone tries to get their ducks in a row and talks to the story over to get it straight. Well after 4 wks I email and ask where they are. She calls and tells me about future plans with our son about next surgeries etc. I told her we knew all that and that they were avoiding the issues. She also now tells me that we can’t have a copy of our records u less we pay which would be over $500. I smell cover up. Needless to say we will not be going back to that Childrens. We are so disheartened by the morals and hospitals living on old reputations and money. I just pray this never happens to anyone else and please educate yourself and stand up yourself. I hope this wasn’t too much run on but it feels good just getting it out. We do not want anyone to have to go through what our son did, no one.
written by Worried Parent
submitted in the Parent’s Venting Area