Suggest Treatment For Collagenous Colitis In A Teenager

Question : Recently I asked you about my son, who was diagnosed with collagenous colitis in 2014 at the age of 13. He has seen various paediatricians and gastrologists and the common thread is that they do not know what causes the condition or how to treat it but it is a condition to be "managed" . This we have been doing with a strict gluten and dairy free diet, with good results. But our son has struggled to gain weight over the past 18months and the paediatrician wanted him to have a NGFTube fitted for a "trial" period for 3 months, to which our son was strongly opposed. He has always been a very slow eater since birth, but has eaten regular good quality meals. But due to his low BMI the paediatrician was insinuating that he had an eating disorder.
We then visited a gastrologists who admitted our son to hospital and did a range of blood tests which showed that our sons vitamin and mineral levels were fine and his heart and liver function were normal. This gastrologist felt that the NGFtube was unnecessasry and would not benefit our son at all. We would like to know of another teenager with this condition and how they are coping, but have not been able to be put in touch with someone with this condition. Our son has not been treated well by the medical profession, and the only doctor he has any trust in is our GP who has known our son all his life and also does not feel that a NGFtube is the right treatment option for a 16 year old male.

Yes, we did follow the gastrologists advice, but the paediatrician had reported us to human services, which is a government dept, stating that our son was in danger of heart failure. The gastrologist opposed this at the time of my son's testing and hospitalization , but six months later he changed his opinion ( we have strong proof that he was pressured by the paediatrician) and he also reported us to human services. This was not their field. We were then told that our son had to be admitted to hospital, into an eating disorder ward with anorexic teenage girls. This was extremely distressing for him. His bathroom door was locked, and he was unable to access the toilets when he needed to.
Within 3 days the nursing staff were completely aware that our son did not have and eating disorder as he was eating everything he was given .
He was started on a diet of 2500calories for the first 3 days and gradually increased over the next month to 3500 calories.
this was made up of 2250 calories of a drink supplement and the remainder of meals - gluten and dairy free.
He was totally taken of the supplements that he was on at home, ie glutathione , and probiotics .He had extremely bad diarrhoea the whole time he was in hospital. He was not allowed to do any exercise and had to sit on his bed for hours each day. He was only allowed outside for 30mins per day, only because I was with him at the hospital .He was also vomiting on a daily basis, once , sometimes twice per day, because of the large amounts of Fortisip he was forced to drink. The nursing staff even told me , "that no one is expected to drink 7 x 200ml bottles of this supplement " as well as meals. The doctors would not back off.
During this time our son gained 4kgs over a month. he has since gained another 8kgs since being discharged, over the past 6 months. The psychological effects have been detrimental to his well being. He has serious reflux from the constant vomiting in hospital, and his bloods, which were all normal prior to admission, have dropped. HIs iron/ferritin levels have gone from 16 -down to 7 and his vitamin D is significantly lower , due to his lack of outside exposure.
He is now not allowed to do any acitivity at all, no sport and no normal exercise.
He is now due to turn 17 in 4 months time. He is weighed every 6 months and if his weight has not increased by 2kgs he is threatened with readmission.
Stress is a key trigger for collagenous colitis. Also low immune, food malabsorption, and delayed puberty are all side effects of this condition.
We feel that our son is not receiving the respect and care that he is entitled to.
The doctors have all admitted that they know nothing about his condition, but continue to pressure him to eat till he vomits, and threaten him with readmission if he does not meet the targets.
Our GP is concerned about the longterm effects this is having on our son, and what the mental outcome will be.