Hi,
I first saw this thread back in March and if I had joined the discussion then I would have been giving a vey different opinion. My daughter, Devon, is 15, diagnosed with Crohns since Sept 2009, we have tried modulin, prednisolone, methotrexate, gabapentin, budesonide, aza etc. Nothing seemed to work and Devon has had two bowel operations. 2012 was an awful year and we were in hospital six times over the year - twice for weeks at a time. It felt as though the disease was calling all the shots and put great strain and worry on us all in the family.
At the start of 2012 Devon was still unwell but all of her tests were coming back normal. She had the pill cam, calprotectin and all the usual blood tests but nothing was showing - so we couldn't understand why she was so poorly. She had abdominal pain but her main syptom was tiredness - extreme, unnatural tiredness which kept her bedridden most of the time.
Devon's medication (aza) was increased on a regular basis but nothing seemed to help the pains and exhaustion and we got into a pattern which seemed to be that Devon felt a little better for a bit, would do something (go to shops, go to school for a few hours, or even just walk the dog) and then would be bedridden for a few days while she recovered her strength.
In May, Devon had a bit of an emotional breakdown - she felt she was missing out on life and was unable to do anything 'normal' and was distraught. She said the worst symptom was the exhaustion now - more so than the pain and it was getting worse. It was an awful time - I sat up all night researching her case and found stories from people who had had similar experiences, I found information on the side effects of her medication which included fatigue. I sent our consultant a very emotional email explaining what had happened and asked that she have her dosage reduced. I explained that either the aza wasn't working or it was causing the problems - either way we needed to do something.
The consultant gave me permission to take Devon off the medication for a few weeks to see how she went.
That was over four months ago and Devon is now a completely different child. Yesterday she returned to school for the first time in months. She is eating again and has put weight on, she is going out, singing and laughing again and basically enjoying life - I believe she is in remission. I suspect she was in remission after her last bowel op in December but the increase in medication since then has caused the problems. I am not a doctor and I must admit that the medical team are not as confident as I am - they do not agree that it was the meds causing the problems - they are pleased with her progress but she does still get occasional pain and they say than unmanaged crohns can come back to bite us if we are not careful so we will see. We have to go back every few weeks so they can keep a check on her, but for now I am so happy to have my daughter back I am praying that we will have this version of her for many years to come
I hope Caitlin is okay and that she can achieve remission too - I wanted to share my story as a mum that did not believe there really was such a thing as remission - the stories on here proved me wrong and gave me hope. I am so used to blaming crohns for everything it took me a while to realise there may be another explanation sometimes. I hope this helps in someway.
Tracey
P.S. Did you get more ducks?
