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Severe Acute Colitis Shock

My story is still sinking in…it’s a long one in a short space of time! Last year on December 16th, my 16year old son suffered a sudden stomach ache. It came on during the evening and the next day he vomited just twice then the diarrhea started. I took him to the doctor after 2 days as he was suffering bad stomach pains. She referred us to the hospital for blood tests which he had then we went home. That evening I rang 111 as he was in severe pain, we sat in AandE for several hours. He had more blood tests and then a doctor came through and told us he was very sorry but it was either Crohn’s or colitis. Just like that!

We were taken up to the children’s ward and over the next 2 days Doctors had backtracked and told us it was a case of severe gastroenteritis and it would clear up with antibiotics. After 3 days and still in stomach pains, we were sent home on Christmas Eve. We had a very unhappy Christmas Day with bad pain and no appetite and bloody diarrhea, drinking gallons of diorite…

Boxing Day came – lunchtime was just a sandwich, but minutes later my son threw up everywhere – it was a bucket full of green sick. Then came the black bloody diarrhea – it was not just a splash, it filled the bowl. We rang the hospital who told us to come straight back in. He threw up again everywhere, then the hospital gave him more blood tests and an iv – apparently the markers in his blood had dropped to 11 and were showing severe inflammation. The Hospital doctor said he had gut rot – a bad case of gastroenteritis and of course he would be in pain with it. At this point he was in excruciating pain in the toilet, going every 2 hours, again bowls of black blood. I would rub his back to ease the pain. I had to help him to the bathroom as he was in so much pain he could hardly walk. He had lost so much weight I could feel his boney spine as I rubbed his back. He would fall asleep exhausted then tweaked 2 hours later and go again urgently but it would take forever. I was beside myself but kept my upset hidden as I couldn’t show my worry for him.

Acute ulcerative colitis

He was now given higher painkillers than just paracetamol. We got to Dec 28th and now the gastro team were involved along with the best surgeon I could have hoped for. My son then had a sigmoidoscopy which showed what they thought was severe colitis so started on a course of drugs too, he was by now on a morphine button to control the pain which wasn’t doing a lot. At this point his stomach had started to swell and he was struggling to release his gas. Xrays showed his large bowel was distending. He had CT scans to keep an eye on what was happening. He was started on steroids which had no effect and at this point we were told he had acute ulcerative colitis. And he may need surgery.

We were introduced to the Stoma nurse. Over the next few days things got worse, there was 1 last resort which would be an unlicensed drug, Infliximab, that they would try. This we thought would work and after the first day the doctors were positive things were improving. But alas, after the second dose 48 hours later and a scan showed his bowel was severely distending and the gas building up in his stomach was so painful. His surgeon told us he had another day to wait then he would need emergency surgery. It was planned to be keyhole – but during the operation it was found his large bowel was so fragile and badly diseased that they had to perform open, as it was on the verge of perforating.

7.5 hours later he was out and put on the ITU. He had a laparoscopic subtotal colectomy and end ileostomy. What was hoped to be a quick recovery was not – he suffered vomiting due to post op ileus that was not picked up straight away and was full of gas he couldn’t expel. He had so many cannulas the hospital decided to put in a picc line, as he had lost so much weight and wasn’t eating (he was admitted 73kg and was now 56kg). But, that was put in the wrong place and he had to go back down to theatre to have it put in again.

He had a nasal tube to drain the green contents from his stomach which was syringed 6 times a day. He was also vomiting with the tube in but had no strength to move himself to upright so I stayed with him to adjust his bed up and down every 1.5 hours or so, to make sure he didn’t vomit while lying down. His Stoma took almost a week to kick start off and he also has a mucus fistula.

His operation was on Jan 3rd, he was eventually discharged Jan 26th. Things have been very slow, from not being able to walk to one end of the house due to lack of energy and discomfort, to now attending school 2 hours a day and a 1/2 hour trip to the gym every other day. Small steps – but the relief of being out of the pain he was in is immense. He has adapted so well to the big change as a case of ‘well let’s get in with it’ attitude. His surgeon has been the best we could have wished for throughout all that has happened, he has this week explained options for the future. Being still in a recovery phase it is a sit tight, we wait and see.

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Comments

  • TPChamp
    8 months ago

    Ugh…this brings back memories. I was the patient, not the parent but it’s all very familiar. Hope the little guy is feeling much better after the surgery. The green sludge and nasal tube are the worst. I’m four years out from my J-Pouch surgery and doing very well. There’s light at the end of the tunnel! Cheers!

  • angelmum author
    8 months ago

    Thanks for the support – I’m sorry, its so bad for anyone to go through. He’s staying strong and really accepting of it – anything to be out of the place he was in 🙂 Sending you all the best

    XXX

  • thedancingcrohnie moderator
    8 months ago

    Goodness, I can’t imagine watching my child go through all of that. I often think about my parents and how they had to deal with all the hospital visits and watching me in pain etc. It is just as hard on the parents as it is for the patient.

    I hope your son continues to recover and heal from his surgery. I will have him in my thoughts.

    Please know you have a community here that will support you always. Thank you for sharing your story, as I know you will bring comfort to other parents who read it and are going through something similar.

    Sending virtual hugs.

    Always dancing,
    Elizabeth (team member)

  • angelmum author
    8 months ago

    Thank you for your kind words of support. It is a real eye-opener to realise so many people go through this suffering and yet there is so little awareness of it and how bad things can get.

    Throughout a lot of the time in hospital with my son, all I could think was how bad it is for others in the world. Those who have no access to the hospital facilities and surgeons we do. Some cannot survive and that is heartbreaking, it is so sad for anyone to have to go through.

    Sending Love xx

  • thedancingcrohnie moderator
    8 months ago

    Yes, it is so heartbreaking. The strange silver lining in it all, at least for me, is that you don’t realize how blessed you are until you go through horrible trials. My eyes were never opened to the suffering of others until I experienced my diagnosis. It changes the way you view life and the world. Everything takes on a new meaning.

    Keeping your family in my thoughts and prayers.

    Always dancing,
    Elizabeth (team member)

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