My Daughter Has Crohns Disease

For those of you who are not familiar with Crohns Disease it is an inflammatory bowel disease that affects over 75,000 Australians alone!  This number is projected to increase to more than 100,000 by the year 2022 and I reckon it could be even higher than predicted!

Crohns disease is debilitating to the sufferer, inflammation in the bowel is painful, serious and oftentimes causes the patient to spend endless weeks in hospital often resulting in surgery to remove part or all of the bowel. There is no way you can pretty this up, there is no cure, there are no triggers to look for as no one knows what actually causes it.  It is thought that poor diet is a big contributing factor and in my daughters case I can well believe that!

My daughter is 25, she has 3 little kids, one 5 year old girl with anxiety issues, so much so we had to take her out of school because she wasnt coping, a 4 year old who is low functioning autistic, he is very challenging, still in nappies, still having bottles, but he is the most beautiful little boy, and then there is the 1 year old baby who at this stage is non verbal and also displays signs of being on the spectrum. So needless to say she is a very busy woman, doing this whole mum thing while ALWAYS being sick. There is never a day she isn’t sick, her days just vary as to the severity of the sickness.   She is lucky though, she has a very supportive partner who is amazing with the kids and housework, oh and can I mention he has Obsessive Compulsive Disorder, luckily though because their house is always clean LOL! (no joking matter really).

She is on pretty full on medication and the next visit (which is this week), will determine whether these meds will be changed to stronger ones or they will keep her on the ones she is on. Pain management is by the way of essential oils, which, her head gastro nurse has encouraged, they acknowledge that essential oils are amazing for pain, which, really surprised me, I haven’t usually had too much positive feedback from members of the medical society toward essential oils. So we use them! I was actually surprised to the extent the oils worked!

Diet, is a huge factor we have found, there are specific foods you need to eat during a flare up and when you are just ‘normal’.  My daughter has a long way to go before she has really got on board with the complete change of diet but she is getting there.  To eat good organic fresh food here is way more expensive than eating crap which is horrific but I understand it is the same in just about every western culture.  So we are growing some of our own food.

These pics were from yesterday for yet another MRI down the coast, none of her treatment can be had locally so travel is a requirement of this disease for us also.  That drink she is drinking is the dye, it’s foul tasting and makes them very ill.  After our hour trip home she went straight to bed followed by a night of broken sleep and terrible pain in her abdominals.

I feel so sorry for little kids who are getting the illness and for people that have to work, and the elderly oh my gosh it would suck for them! I mean in a flare up it is not uncommon to have diarrhea up to 50 times a day, I kid you not! The pain is excruciating and exhaustion is like nothing else.  To have to work through that is horrific and I just pray that there are some really understanding bosses out there and I hope that sometime in the near future they will find a cause and cure for this dreadful bloody disease!

 

 

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