My sons story began early in 2010. Weight loss was noticeable, as were the frequent showers. We put the weight loss down to a gain in height, and the showers a passing teenage obsession with hygiene. We were all struggling to cope emotionally at that time with the death of 2 family members and the adjustment of life without our eldest daughter, as 2010 was her first year of university. DS (then 15) chose to hide his symptoms for fear of burdening us further.
DS had several trips into hospital for severe abdominal pain. This was diagnosed as a rumbling appendix, with all questions regarding bowel habits being answered by DS as 'no change' and 'normal'. An emergency appendectomy on trip 5 resulted in a nil result, but an observation of mesenteric addonitis (swollen lymph glands) around the appendix. At a follow up appoinment wit the surgeon, DS was questioned again about bowel habits. It was only when we were in the car park he asked me if I ever bled from the bowel. The dots joined then, and I went straight back to the surgeon to information share what DS divulged. A colonoscopy followed, where without waiting for biposy results, we were told the diagnosis would be Crohn's due to presentation, and it was one of the worst cases the surgeon had seen in someone so young. Biopsy results confirmed visual obs.
The battle then started with meds, with Pentasa causing DS to have anxiety attacks. Asacol suited him much better, but even azathioprine made no difference. Steroid therapy failed also, so following further testing, the decision was made to proceed with an ileo-caecal resection mid 2011.
Since then we have struggled to get DS into remission, with his weight currently being 20kgs lighter than his initial weight prior to symptoms beginning. Humira was our next step, with funding approval sought and approved. A second opinion turned life around and unbelievably, the biggest difference has been diet. Testing has resulted in proof DS has IBS as well as IBD. FODMAP has helped turn things around for him. His biggest issue now is learning to eat MORE. He doesn't seem to get hungry in the same way that you or I do. He is now pain free, and trips to the toilet are limited to 3-4 times a day. He is currently on Asacol only. Pain he was experiencing was from gas and bloating, and not from an inflammatory flare. DS never took Humira, as it was proven he did not need to.
I have suffered with my son as only a Mother can. No one wants to see their child in distress. The dignity and strength with which he has handled this life changing diagnosis is truly remarkable. He is now training as a paramedic, and his mentors have commented on his maturity and ability to naturally empathise with patients. This I don't believe, would have been the path his life took, had not he weathered through this journey with Crohns. I am so terribly proud of my boy, and feel for all of you out there who suffer with, or live with, IBD. Hats off to each and every one of you, no matter what your story :ghug:
DS had several trips into hospital for severe abdominal pain. This was diagnosed as a rumbling appendix, with all questions regarding bowel habits being answered by DS as 'no change' and 'normal'. An emergency appendectomy on trip 5 resulted in a nil result, but an observation of mesenteric addonitis (swollen lymph glands) around the appendix. At a follow up appoinment wit the surgeon, DS was questioned again about bowel habits. It was only when we were in the car park he asked me if I ever bled from the bowel. The dots joined then, and I went straight back to the surgeon to information share what DS divulged. A colonoscopy followed, where without waiting for biposy results, we were told the diagnosis would be Crohn's due to presentation, and it was one of the worst cases the surgeon had seen in someone so young. Biopsy results confirmed visual obs.
The battle then started with meds, with Pentasa causing DS to have anxiety attacks. Asacol suited him much better, but even azathioprine made no difference. Steroid therapy failed also, so following further testing, the decision was made to proceed with an ileo-caecal resection mid 2011.
Since then we have struggled to get DS into remission, with his weight currently being 20kgs lighter than his initial weight prior to symptoms beginning. Humira was our next step, with funding approval sought and approved. A second opinion turned life around and unbelievably, the biggest difference has been diet. Testing has resulted in proof DS has IBS as well as IBD. FODMAP has helped turn things around for him. His biggest issue now is learning to eat MORE. He doesn't seem to get hungry in the same way that you or I do. He is now pain free, and trips to the toilet are limited to 3-4 times a day. He is currently on Asacol only. Pain he was experiencing was from gas and bloating, and not from an inflammatory flare. DS never took Humira, as it was proven he did not need to.
I have suffered with my son as only a Mother can. No one wants to see their child in distress. The dignity and strength with which he has handled this life changing diagnosis is truly remarkable. He is now training as a paramedic, and his mentors have commented on his maturity and ability to naturally empathise with patients. This I don't believe, would have been the path his life took, had not he weathered through this journey with Crohns. I am so terribly proud of my boy, and feel for all of you out there who suffer with, or live with, IBD. Hats off to each and every one of you, no matter what your story :ghug:
