This blog is my interpretation and my thoughts of what it is like to live with a someone who has a chronic illness. I myself am very healthy- well as healthy as I can be and fortunately I will never understand the pain and discomfort that my boyfriend goes through daily.
I originally started this blog back in 2018. However when I was creating it Ben started to be well again and I (stupidly) thought that this blog was no longer relevant so I lost heart in it.
However, I now realise that chronic illnesses do not go away. They are like an active volcano that's
dormant. You never know when it will explode but there is always signs of it there.
For you to understand my perspective through this blog, its important I give you some background information.
Me and Ben have been together for five and a half amazing years. Ben was diagnosed with Ulcerative Colitis (UC) and went through surgery before we knew each other, he had an ileostomy bag, or a “Bag for life” as I nicknamed it when I first met him.
All natural pic of me and Ben. Spain 2019.
Ulcerative Colitis is an autoimmune disease that affects the large intestine- also known as the colon. The symptoms is causes are horrific and include: bloody diarrhoea , weight loss, and stomach cramps. There is no cure, and treatments are different for everyone. Removal of the colon is a last resort and usually a desperate attempt to stop the symptoms.
We are not sure exactly when but Ben started to develop Crohns Disease which meant his Small Bowels were now being attacked. Crohns is very similar to Ulcerative Colitis and both display very similar symptoms.
This time- luckily – Ben escaped the diarrhea stage through already having a bag. Although he lost half his body weight, experienced a lot of pain and discomfort, the consistency of his stool in the bag loosened and he started to loose a lot of fluid.
This caused chronic cramp over his whole body and numerous hospital trips and appointments to try and treat the crohns too lessen the symptoms. I'd admit I was absolutely terrified as this was literally a couple years into our relationship. I had no idea it could get this bad.
Through all this Ben continued to work full time and tried his very best to live his life normally. I honestly can not imagine how difficult this was for him.
Eventually the symptoms got the better of him and he became very ill. Ben was admitted to hospital on the 27th of April and spent 9 months in and out. He was put on TPN (Type of tube feed) for months strictly no food !!! Then finally he had a surgery in the September to remove some of the unhealthy bowel and re-sight the stoma.
I literally refuse to post any pics from 2018 and the too many hospital photos. I don't feel like going back there. But enjoy Ben and I together very happy in Spain 2019 8 months after the surgery ordeal. We appreciated this holiday.
2018 was a shock to say the least. It was scary, seeing Ben in that state literally broke me. But what shocked me most was the lack of support to the partner or family and friends of the ill person. I literally felt like I had no support and no-one around me that understood the pain I felt. If I am being totally honest. I still feel that way now. Which is why I think this blog is so so important to me.
There have been times where I have felt extremely isolated and haven’t had anyone to share my experiences with. Which is why I have decided to share a blog of my journey my thoughts my feelings. I love Ben in every way possible and I totally respect all those going through Crohns and Colitis however this blog is an opportunity to explain and vent some of the frustrations I have dealing with Crohns as the 'Support'.
Hopefully some of you guys will find comfort in the things I say and will realise that everything you and I feel is OK and actually you we are not alone.
Who knows if you are in a similar situation to me maybe we can help each other find support and share stories. A problem shared is a problem halved.
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