Anxiety, Challenging, Chronic health condition, Chronic Pain, Depression, Doctors, Exhausted, Gastroparesis, Menopause, misunderstood, Panic Attack, rare disease, Tired

Update: Menopause and physical health

So menopause is going well so far. I’ve noticed a few hot flushes and I did have some bleeding and some spotting but nothing too extreme. I’m on the hormone replacement patches now and off the pill. I got my second menopause shot today so we shall see if I get some more side effects and if I notice it more.

On the other hand, I was in the hospital for over a week two weeks ago under the care of the Gastroenterology team. I had been having lower right sided for a pain for 2 weeks and severe nausea for a week before that before it got to the point where I had to go to the hospital. My gastro specialist sent me straight to the emergency room and I was able to get a room on the gastro ward under the care of my gastroenterologist and his team. I got a CT scan which showed inflammation of the lymph nodes and thickening of my small bowel where that right sided pain was located. I hadn’t been eating or drinking (because I had such severe nausea) for 3 weeks before I went to hospital so I was put on fluids and also given some good pain relief. I found out I was allergic to morphine so that’s good. I also got an MRI which looked fine apparently. I sent off a feacal specimen to test for inflammation markers and if that come backs positive then I probably have crohn’s disease but because all my scopes I’ve had have come back normal, it’s most likely going to come back fine and rule out crohn’s disease once and for all.

The gastro team and my specialist think I might have some rare autoimmune, inflammatory disease called Mesenteric Panniculitis which is also known as Sclerosing Mesenteritis. The doctors told me that they don’t actually know much about this disease at all and that there isn’t really a way that you can diagnose it for sure so they’re going off my symptoms and also what the CT scan showed. They put me on high dose IV steroids for two days and then tapered me down to oral steroids which I am on for the next couple of months following a tapering schedule. The high dose steroids definitely helped the nausea and some of the pain. I am seeing my gastroenterologist in a weeks time to talk more about this possible diagnosis and a treatment plan. I also found out in hospital that I am severely constipated to the point of a possible bowel obstruction so I am on a very strong laxative regime every morning and night. The doctors told me that my bowels are pretty much completely paralysed right now and they don’t know when they’ll go back to working. Really hoping the paresis of my stomach hasn’t moved down to my bowels and is now causing bowel paralysis. I really really really don’t need that on top of everything.

I’m feeling scared, anxious, frustrated and sad but also trying to remain hopeful and remember that even if I do have this scary rare disease I might have some answers and find a treatment plan that works and I might be able to get some quality of life back. Right now I can barely walk without pain and I am basically on bed rest.

Understandably this possible diagnosis has had a negative affect on my mental health. My anxiety is very intense at the moment (not helped by the steroids) and my depression has also gotten worse. I’m making sure to be aware of my mental health though and talk to people and get some support.

Not sure what else to say.

Keep safe,
Maddy xoxo

Twitter: @ChronicMaddy
Instagram: @chronicmaddy

 

Featured image: http://www.booksinherhead.com/2017/12/life-update-winter-2017.html/

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