…but this time it wasn’t directly because of Dysautonomia, but kindof because of the EDS!
I ended up back in hospital 4 weeks ago because of serious pain in the area of my Gallbladder. I had been nursing a nagging in my gallbladder area for a few days prior then out of the blue, a faint and I woke to excruciating pain in my right hand side, up near my ribs. Ambulance called and I was carted to Hospital once again with suspected Gallbladder trouble.
It wasn’t long before I was admitted to the surgical ward under a new surgical doctor and his team who were excellent, their enthusiasm was like nothing I had been used to with my usual team of doctors. The doctors suspected Gall stones or something to indicate the gallbladder was in trouble. A lot of tests later and it turned out luckily for me that there were no Gallstones but one test did show I had Gallbladder and gut Dysmotility meaning it was not emptying or behaving as it should and this was causing the pain, discomfort and other problems in my gut too.
I was very sick, uncomfortable and in a lot of pain, even though they treated me with strong pain killers and continued some tests. I was then free to go home the Friday of that week.
While at home I was still very unwell and everything I ate hurt me and made me feel worse until that Sunday night, I became very unwell after dinner, vomited and the pain in my side erupted, ten fold! I cant even begin to describe the pain I thought I had been skewered! This continued long enough for Keith to ring an ambulance again.
When the Ambulance crew came they transferred me into the back and called the hospital to fill them in of my condition saying my pain was 10 out of 10, that was no lie, I never felt anything like that before!
One of the guys started to worry about my Blood pressure as it was reading only 80/40 (Normal reading is 120/80) and he was concerned encase I may faint and go into respiratory arrest as I usually do when I pass out. The pain was terrible but they called an advanced paramedic to meet us half way to the hospital and he could administer Morphine until I got to Resus in the Hospital.
I arrived in Resus, blood pressure very low, pain and heart rate very high, they started attaching wires and sensors while I groaned on the bed. This ended up being a very long night, my body started giving out and acting up to the point where a catheter needed to be attached as certain systems in my body had decided not to cooperate because of the strength of the pain meds I was on.
More tests, A very long waiting time in an extremely busy A&E and I was finally admitted to a bed on a ward upstairs.
Long story even longer, I ended up staying in the hospital another 2 weeks, making my overall stay with this thing just over 3 weeks. I had some xrays, other tests and Gut Transit studies done during my stay, these showed that my gut was in worse shape than they originally thought. It has severe dysmotility, most likely all caused by the EDS and Collagen problems in the gut. It is treatable but there is no guarantee it wont continue to get worse on its own.
Going forward my Doctor mentioned I would have to use certain medications to help with the gut transit issues and I have the be extremely careful with what and how I eat as my gut is in danger of dying altogether now that it has gotten to this stage, so I have to treat it like a baby! He mentioned following the Low Fodmap Diet as a matter of necessity not of choice. He also supported me going to the UK for treatment, he agreed that there are no specialists here that are knowledgeable in EDS and its related complications and he was kind enough to ask the ward nurse to look into any financial options that would be covered by the HSE. Unfortunately I heard nothing back on this but it was the first time a doctor acknowledged the need for treatment abroad. I will be making an appointment to see Prof Aziz in London in the new year.
So after getting this info along with a long list of prescriptions, he said I was free to go and he would refer me to his outpatients clinic for the new year to follow up on how I am doing. He also said he wanted me to see a specialist Gastroenterologist and I got an appointment just today, to meet him tomorrow morning, so I will be interested to hear what he has to say. The same doctor has a personal interest in EDS.
I will update tomorrow on how the appointment with the GI specialist goes, hopefully it is all good and helpful news going forward. I hope 2015 is less on the hospital visits than this year has been!!
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UPDATE: 23/12/14
I went and had the appointment with the new Gastro Doctor in Nenagh General Hospital and he has put me on a new drug to stimulate my gut function, other than that there is no new news 🙂
Irish Dysautonomia Awareness 