Hereditary Pancreatitis

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Hereditary Pancreatitis
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I'm new here!

Hello. I'm Caroline but my username is Loudflower. I'm here because I've recently been diagnosed with hypermobile Ehlers-Danlos - this diagnosis came a few years after being diagnosed with breast cancer due to a gene mutation and going through all the surgeries and treatments that follow. That is the very short version. Life has changed, y'all. Some days I am determined and optimistic and too many days I am just struggling. It's a lot. I have even retired early (I am a pharmacist). I'm hoping to learn from everyone, and hopefully to find a laugh or two as well.

#MightyTogether #EhlersDanlosSyndrome #JointHypermobilitySyndrome #Hypersomnia #HereditaryBreastAndOvarianCancer #HereditaryPancreatitis


So this is life

I am in my 50’s and have #HereditaryPancreatitis and other hangers on illnesses and disability caused by this.

My mother knew when I was a baby that something was wrong and it was probably that . I started vomiting formula between three and six weeks and the serious pain started at three. It took til I was seven to be diagnosed fully.

My life has been full of “unfinisheds”. School , various college courses , I qualified for art school but was not allowed to go. I have never properly finished a probation at work, been made redundant 6 times and had a full hysterectomy in my twenties so no children, therefore busted #Relationships . I was very lucky to meet my husband in my late twenties and we are still together.

From 2017 to 2021 I had the best years of my life. I was not being admitted to hospital 4 /5 times a year and was living a ‘ life” of sorts. Using I’m morphine at home to “live” a life . I was not frightened of doing things, eating, going places and life was good within my boundaries. Then I had my first #COVID19 jab. It floored me . Within two weeks I could not eat at all and spent 4 months in hospital. Then around Nov 2021 I was discharged on a tube feed. I was putting on weight I went out with a friend for coffee twice . I felt I was getting my life back. Then all of a sudden a phone call from a pain “consultant” he was taking me off my opiates in line with new legislation, all of them . No titration , no discussion . Worse still the local hospitals then refused to treat me. Christmas was hell , pain vomiting, and withdrawal. I was not allowed to contact him , he would not discuss things with me my husband or gp. I was not his patient and yet he had the right to do this. My health deteriorated very quickly , I lost 22 kilos in weight , became very emotional and lost everything and to top it all my brother took my family away from me including my mother , who has altzeimers. I am now no contact with them all. He is a narcissist who controls my mother and his family. But by the grace of god, he never got this I did. He however used to fake my symptoms to get attention , time off school. We are finished he has told people I have bi polar and am a drug addict.

So here I am a long way from home in hospital for 3 months. Because I can no longer have my medication at home. I contacted NICE, who confirmed that the new legislation was not aimed at people who already had been on opiates , but should only be applied to new patients . My GP won’t listen .

I have not eaten or drunk for 18 months. No going out , no seeing people tube fed . I live in hell .

So life for me and my husband is over. No pain relief , no life. No family. . Over …………….


Advocating for others like me!

I’m thinking about starting a patient advocate service for pancreatic sufferers! Whether it’s from chronic pancreatitis, acute pancreatitis, pancreatic cancer or some where in between! I have a degree in social work and I’ve suffered for 5 years now with some form of pancreatitis! Or should I say everything but pancreatic cancer!!Any advice on where to start? #ChronicPancreatitis #PancreaticCancer #HereditaryPancreatitis I #ExocrinePancreaticInsufficiency ##pancreaticdivisum

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Ceiling tiles #Hospital #illness #InvisibleIllness #HereditaryPancreatitis #pancreatitis #ChronicIllness #ChronicPain #Nurses #InvisibleDisability

As I stare up at the ceiling I am comforted. The same ceiling tiles. Off- white, slightly dusty, crisp and square. Everything is normal. The light tile is there and so is the vent tile. As I look to my left and to my right I see the happy painted curtain held together by fish like netting on the top. This is my normal. This is a place that I can find comforting. The sound “whoosh whoosh beep” as the fluids are pushed into my veins. The sound of a singing beep as the medicine alerts the nurses that it is ready for the flush. They come in. They ask how the pain is. I tell them fine because that’s what they want to hear. It never is fine but at least they can rest easier. As the words slip from my lips I continue to stare at the same classic off white ceiling tiles. I wonder how many prayers they have heard and how many prayers have bounced off of them and were returned. How many people have looked to the sky (ceiling tiles) for answers. How many laughs have these tiles seen. Have they seen more tears and fears. Have they seen to much death enough to put any caring person in bad health. Have they seen patients alone crying for a chance or have they seen patients crying for death. Pain. That’s what they have seen in all ways and all types.