we lost our son luca on 29th july this year on his 21st b.day. luca was diagnoisd with ulcerative colitus when he was 17. this eventually lead to psc a liver disease. He was workig with his dad as artificial grass fitter but had to give up after 18 months due to fatigue, etc. His dad had a porta loo on the van as luca had to go to loo a quick a poss and often had accidents. He were having bloods done every 2 weeks, he would have iron invusions at the hospital. Cameras to check his bowel which he hated and cameras down his throat to check liver. He was on meds for his liver , all the meds available fo colitus were not doing anything for luca so he was never in re-mission. He developed anxiety but he was at home and looked after. He did managed to learn to drive but had to cancel many app at last min but his instructior was great. When on a lesson they would always stop for the toilet and for luca to rest. We did get him a car but he only managed to drive it maybe half dozen times, to tired, and anxiety had set in bad. His mates would come over which was great but would knock him out for couple days worse than ever. He never slept laying down always up on 6 pillows, up and down using the toilet. We eventually got referred to Addenbrooks as West Suffolk could do no more for him med wise. He had three more different meds, eventually self injecting last oct every 6 weeks. Again not working. They stopped and we were due to go to see his consultant late june and was decided a stoma bag would be fitted which Luca was fine with and now desperatly wanted to have some sort of normal life. Beg June Luca came down and his legs were badly swollen,feet ankles. He had had some fairly light swelling below his knees withing past nine months, i checked with hosp they said was part of liver disease. I said of to A@e. he hated this. We actually went two week previous due to swelling and he could not speak properly struggled, he had started to breath quickly over last yr. They said he had chest infection and would clear up i 2 weeks if not go back to g.p. They were lots of meds luca could not take because of his colitus so he suffered. So off we went, we went into the g,p at a@e and she said he had to be admitted. We were in West Suffolk for 8 days waiting for a bed a Addenbrooks as they said he neede to be there. He was on iv drips for lots of things, swill swollen. Off we went to Addenbrooks, set up on drips again, pic line in his arm his arms were black and blue from so many needles so in went the pic line. After 3 days he developed lung infection and was pretty bad that night, blood tranfusions etc. We were put into isolation for two weeks, anyone entering room had to wear masks. I slept a fair amount in a recliner chair as his anxiety was not good. I did everything for him as he did not want the nurses too, that was fine i was his mum. He was on water tabe, urine had to be measured. After 3 weeks, scans xrays etc he was going down for t.i.p.p.s op, stent through side of neck and shunt through liver. His blood was not flowing to heart,not getting through liver as it was bad, all blood vessels had grown of liver trying to get through to the heart. A four hour op took just under 9, i was worried sick. All ok, they found out he had a fractured vertebrau also, he was in pain ith that, was given oral morphine. Nearly 3 weeks after liver op we was ready for his complete bowel removal, he could not of had this done under liver wasdone, also he was on list for liver transplant as it had got to bad. Inbetween recovering form liver op, he managed to get up to use toilet, he felt great pain, slid down the wall, after being on floor from not being able to move for nearly 8 hours, was hoisted up to his bed. He now had 2 fractured vertabrae, this one severe, he was in agony. They said this was happening because he had been on and off steroids since he was 17 for colitus. Went down for bowels removal. Was in int care for 3 days. Pulled through, i was still staying. I would get up crack of dawn to get to addenbrooks because parking was a nightmare and when i did go home leave, 9 or 10 at night. I took in food for him as there was a lot he could not eat he was also dairy intolorant. He was copeing well with his stoma but his scar was badly infected and not healing. He had two drain and one constantly leaked. Ater 2 weeks we wanted to go home, , scar still infected but was on iv drip antibiotics, still on drips for vits, iron, and nutrition. We were so excited to be going home. Luca was still swollen and was in a wheelchair due to this and his spine. We had our out patients appointments and a new one for his spine. He was also going to have a cardio echogram in outpatients, he breathed fast but they said it had dropped by 20 since being in hosp. Got home after great difficultly, it was fantastic and was planning a family party for homecoming and his 21st. Distric nurse came to dress his scar etc, stoma nurse was due on the tue day after his b.day. He was coping with his bag with my help as he could not get up. Made his a bed on sofa, everything to hand. He was in pain but never complained only broke down once in hosp after his bowels removal, i cuddled him so much. On his b.day he was unwell, he was sick so i phoned doc, she came out and called ambulance. Why waiting for it his hands and feet were cold and his nails blue, he was always hot;. I held his hand why waiting for ambulance. They put him on a drip in our home , and oxygen, of we sped , straight into resus, luca was upright and talking but unwell. The int unit team were hooking him up to alsorts, needles in arms. Took hi of for scan, his wound was infected but that was not making him ill. They said they were going to take him up to Int care and make him comfortable, he went one way me and his dad , who had now arrived went another to relatives room. Withing being in the room for 2 mins , we were asked to come quick,Luca had taken turn for worst. We watched the team fight for his life for just under two hours doing allsorts from just outside his open curtain. I cannot describe the feeling you are going through at this time is was complete agony. They had to call it at about two hours as we could not. No pulse at any time, they said by then if he had come back he would not of been right because it had been to long with no oxygen to brain. We were told kidney failure and massive heart arttack. We were in a terrible mess. It had to go to a coroner after an autospy came to no conclusion of death. He died of giant cell myoditis and possible sepsis. This is a very rare condition and is only detected by a heart biopsy and you need a heart transplant to survive. This condition did come from his ulcerative colitus and what is does to your body virus wise, they said the lung virus he caught in hospital most prob was the start of it. We are waiting to see all the docs .consultants who dealt with Luca to talk about this. We are completly devestated, me his mum particulary, i feel i cannot go on without Luca . I desperatly yearn for him so badly every day its unbearable. He should be here recovering and having a better life. He would of needed a liver transplant, and obviously if detected a heart one now, but we would of dealt with it when it happened. He would of never had a full healthy life but a better one and a living one. We had so many plans and he was happy with his stoma, no more accidents. I am tryping this now in a bad way, i need to stop.
Hello Tonia, I do not know what to say to you , except I am so so sorry for your loss of your lovely brave son luca, you have been through such a horrendous time, Iwish I had the right words to comfort you, but know exactly what you are going through Take care Maddie xx
Thankyou Maddie, your message made me cry again but it is appriciated. I hope whatever your story is you are doing well. take care too xx
Dear dear Tonia, i’m so so sorry you have lost your precious Luca to this horrific disease.
I too lost my daughter to Crohns related complications in August 2018.
I can identify with all of the horrid suffering you describe. My poor daughter suffered them too and eventually they beat her too.
It is very early days for you and everything is so raw. There is nothing I can say to help apart from you are not alone , and you are truly in my thoughts.
Sending you a big hug. Xxx
thankyou Matella, i am crying again reading your message. How are you coping without her. Had you heard of giant celll myoditis?. I am completly lost witout Luca, how are you doing this. I canot see anyway forward without him, i yearn for him so badly and want him to be alive, its so unfair. xx Hug to you too
I had not heard of that Tonia. I so hope we will beat Crohns one day. I hate to think of all the people living with it. So cruel.
I miss my daughter so much and at times it is unbearable.
Just lately, however, once or twice I have felt a sense of her being tucked safely in my heart. It feels as if in the last year I have analysed everything from every angle. That is not to say that I have finished grieving but that I am beginning to process what has happened instead of living in a numb fog.
It will be a long long time until we function and live beside our grief, and only when we are ready.
Take care Tonia. Xx
Dear Tonia,
I am so sorry you have lost your precious boy and everything you had to go through with him.
Life is unbearably hard when we lose our precious children. But I am glad you have found this site as everyone understands how you feel and we keep each other going.
Much love to you xxx
thankyou for you words. Its so heartbreaking and i cannot see any way forward without Luca at present. Its a living torture not to see him,hear his voice. xxx