My #GetYourBellyOut story: Oscar

Oscar was born a healthy happy child; he reached every milestone without any problems. Oscar’s problems began when I stopped breastfeeding him at 18months old, Oscar got bad constipation really quickly and struggled every time he had a bowel movement. I took him to our doctor who prescribed him Movicol. He was to have 3 sachets a day but after 2 weeks Oscar was still struggling when going to the toilet. I took him back to the doctors who just advised me to up his doses to 4/5 sachets a day. Again, Oscar continued to struggle, and the doctor then added lactulose to help.

Oscar was taking 5 sachets of Movicol and 15ml lactulose for about a month and still struggled. We went back to the doctors again and they referred Oscar to the hospital.

We finally got his appointment through and they said ‘because he has had trouble passing bowel movements in the past and it had been painful for him that’s why he was struggling because he is scared to go’ and said it will sort itself out.

Not long after, Oscar hadn’t had a bowel movement in about two weeks, so I took him back to our doctor and she upped his dose to 8 sachets of Movicol a day, 20ml of lactulose and added in 5ml of Senna. Oscar did not pass any bowel movements for 31days.

We went on a little holiday for a week for my birthday and on my birthday, Oscar developed a massive perianal abscess. We took him straight to the hospital where we were staying. They checked him over, prescribed him antibiotics and told us when we go home to take him to our doctor.

We went home 3 days later, and I got him an appointment that day. She prescribed him different antibiotics as he wasn’t responding to the first ones and told us that if there was no change in the abscess over the next 48hours to take him down to A&E.

Oscar didn’t respond to these antibiotics either, so I took him to our A&E. They checked him over and phoned the Royal Hospital for sick kids in Edinburgh who wanted Oscar over there the very next morning for surgery to drain the abscess.

We went to Edinburgh and Oscar had his first surgery, four days before his 2nd birthday. Everything went well and we got home two days later.

About five weeks later Oscar developed another perianal abscess, but luckily the antibiotics prescribed worked. Again, four to five weeks later, he got another perianal abscess – again the antibiotics worked. Seven weeks later Oscar developed his fourth perianal abscess but unfortunately the antibiotics didn’t work. He had to have more surgery to remove the abscess.

Oscar went for surgery and when he came round the doctors wanted a word in private. They said they had to cut a little deeper than expected to get all the abscess and when they did this, they noticed inflammation. They suspected that he might have Crohn’s disease and that they had contacted Edinburgh. Edinburgh wanted to see Oscar two weeks later to do scopes and take biopsies.

I was in shock, as I had never really heard of Crohn’s disease and I thought it was only older people that had it. The doctors told us not to Google anything just yet, to wait until he had had his scopes done and await the results.

We took Oscar over to Edinburgh on the 22nd October 2016 where he got his scopes and biopsies taken. When he came back from theatre, the doctor confirmed that it was Crohn’s disease and that we would need to wait on the biopsy results but judging by what he had seen he was 99.9% sure.

Eight days later we got a phone call and yes it was Crohn’s disease, which we already knew. He went back to Edinburgh a few weeks later to work out what the best form of treatment might be. Oscar did not have any other symptoms of the disease apart from abscesses so we took our time on deciding what treatment he would receive.

During the following four months Oscar would go on to develop five more abscess. He was prescribed antibiotics each time which thankfully worked every time. Oscar was on ciprofoxin and metronidazole every day for 14 months to help stop any more abscesses forming. Oscar then started having tummy issues and would cry in pain some days. He would miss out on going to nursery and started having more and more bowel movements each day. He was put onto prednisone as he was flaring, and we saw an improvement within three days.

Oscar needed the chicken pox vaccine before he could start Mercaptapurine so our local hospital arranged for Oscar to have this. It wasn’t until a week after Oscar had the vaccine that the hospital called us to say they were sorry and that it was the wrong vaccine they had given him. Now he would have to wait four months before he could get the correct vaccine and then start treatment.

Once his four months were up, we managed to get Oscar the proper vaccine and start him on Mercaptapurine. We booked a family holiday abroad and just before we were due to fly out Oscars symptoms were back.

Again, he’s was given prednisone (thankfully our holiday was all inclusive) and we went on holiday. We enjoyed every minute of it! Oscar loved being in the pool from morning till night. Just when we thought everything was going great, Oscars symptoms slowly begin again.

He had been on Mercaptapurine for about 7/8months, but it had never really helped Oscar. Oscar was petrified of going to the hospital every four weeks to get his bloods done to check his levels, so he was introduced to the play specialist to help him overcome his fears.

Oscar has been going to the hospital once every two weeks, for an hour, just for him and his play specialist Amanda to have a play and have fun. The doctors wanted to start Oscar on Humira and after a long chat about the benefits we agreed. Oscar had to go over to Edinburgh to have his first loading dose then he could continue at our local hospital every second week.

We went over to Edinburgh every week for about six weeks until Oscar finally let the doctor give him an injection. Four days later we saw a great improvement but then Oscar developed an itchy bumpy rash on his hands. After a few days this started to disappear but after about 4/5 injections Oscars skins became really bad and dry. The skin on his hands started peeling so we had to moisturise his hands every hour for about two weeks. Eventually his hands started to settle but then one day Oscar woke up and all around his private area there was loose skin (like he had a giant blister that had burst). The skin round his private area started to peel so we took him to the doctor, and she gave us a new moisturiser and reassured us that it was just a reaction to his medication.

Oscar has been doing well and started school in August last year. He has had to miss a few weeks here and there, as some days he’s on the toilet most of the day or is really tired with no energy. Oscar can also wake up with a temperature and have it for 5/6 days then it disappears. He’s also prone to getting tonsillitis and strep throat (I have lost count the amount of times he’s had it).

Oscar was due to go for a scope on the 20th March this year (five days after his 6th birthday) as his symptoms are returning again. He had managed two batches of prep on the 19th of March but one hour before his last batch he developed a cough, so I had to call up Edinburgh and cancel.

Hopefully once this Covid-19 is under control we can get him seen to. We have been self-isolating since his birthday in March and he is doing well with the big change.