Health Update- Blogging from my hospital bed part 1

hospital bed
I wanted to write this post to update you on what has been going on with my health recently.
I have been suffering from gastro problems for a while now related to my hEDS as this is the new name given to what was called EDS Hypermobility. Things have been getting worse with weight loss, nausea, pain and bowel changes. I am under a Gastroenterologist at the Royal London Hopsital and had a recent consultation with him where he wanted me to try some food supplements to try and stabilise my weight, unfortunately I didn't get on with them and my weight continued dropping. My G.P contacted my Consultant's secretary as she wanted me to be admitted. My Consultant phoned on Friday and said he wanted to get me admitted today, this came as a big shock to everyone as I thought he would say Monday. He wanted me to get to the hospital as soon as possible.
My Mum grabbed a case and made sure I had all the essentials as we didn't know how long I would be in for.
Luckily the train service where I live is very frequent to London so we arrived at A&E about 4pm and checked in, then waited to see a triage nurse which was all quite quick, the longest part was at EAU (Emergency Assessment Unit) where we waited hours to see the Registrar, who would be admitting me to the ward. An IV line was put into my arm incase I needed any drugs administered. While I was waiting I saw some interesting things going on in the department during the evening whilst I was waiting. As the evening went on it became busier in the department, which you expect for a Friday night. I just wanted to go to the ward and lie down as I was uncomfortable and in pain. I was finally taken to the Gastro ward at 23:00 a very long and exhausting wait. The sister on the ward was lovely and took me to my side room, which wasn't even ready for me as there was no mattress on my bed and this meant more waiting, I was finally settled in. I was shattered, I just hoped I would get a good nights sleep.


Day 1

Not a great night as woken up by Nurses coming in to take my obs early in the morning. Dr came in to tell me the Gastro team will be in on Monday to see me and discuss what the plan is going to be. I had a really long boring day as it is very quiet at the weekends in the hospital.  Had a visit from my brother and partner in the evening which was really nice as it was a long day stuck in a room on your own. I was shattered though and relieved to have a quiet day after yesterday.

Day 2

Woken up early due to noise from other patients and nurse taking my obs. All the staff are lovely especially the nurses, I was weighed as they need to keep a record of this. My parents came to visit which was nice as it gets lonely stuck in a room on your own. They took me out in my wheelchair away from the ward for a change of scene.

Day 3

Woke up with tachycardia so took my medication to slow it down. The gastro team came to visit me and a nutritionist, they talked about an NJ tube for feeding as they feel that this is the best option for me as it bypasses the stomach and goes into the small bowel. The plan is to try some different food supplements first and very simple foods for a few days. I will have sedation for the procedure which is a relief as I was worried about having to swallow the tube and choking on it. They will use an endoscopy for making sure the tube is in the right place, as it is a bit more involved than an NG tube.  Dr came to see me in the afternoon and he wants me to have IV paracetamol to help with pain as I am restricted to what I can have that wont have an effect on the bowels.

Day 4

Nurse gave me some IV paracetamol. The Dietitian came to see me and gave me a different menu to choose from for patients who find the standard menu not suitable. She also did a strength squeeze test using a hand held device, I really struggled tremendously with this as my whole hand shook from the effort it took. I was told it was just an indication for them and not to worry about it. I saw the Dr who said I will be in next week as well, I was weighed and a new IV line was put in as the other one can only stay in for so long. 

Day 5

I had a bad night sleep due to my PoTS, the nurse took my obs and checked on me a few times. Dr came and wanted me to take Gabapentin to help the pain. Dietitian came in and said we will proceed with the tube as the food supplements have not helped. Nausea was bad after eating lunch, I was given liquid Gabapentin which was unpleasant and caused me to be very drousy and made my BP low.

Day 6

Overslept so missed Breakfast, tachy, nauseous and felt shattered all day from the medication. Nurse weighed me, I had lost some weight, which is not very good.

Day 7

Very drousy again first thing, I was weighed. The gastro team came to see me they said I am still losing weight and mentioned about placing an NJ tube in early next week under sedation. They will keep an eye on my weight aferwards, to make sure I am not losing any more, they still want me to eat little and often

Day 8

Woken up by nurse wanting to weigh me, I was about the same as before.

Day 9

Nurse weighed me and I was the same again. Very quiet on the ward as it is the weekend, nothing really happens.

Day 10

Gastro team came to see me and said I will be having my NJ tube this week. I had a visit from a Psychiatrist who works alongside my consultant and sees a number of patients with EDS, he wanted to know how I was coping with everything, he is going to see me again tomorrow then follow me up in clinic. Nurse told me my procedure will be tomorrow so nil by mouth from 5am.

Day 11

Procedure day, the Nurse put a cannula in my arm which was really painful. Porters collected me and took me to endoscopy, I waited in there for a while lying on my bed before I was taken through for the procedure. I was positioned on my side on the table and then they sprayed my throat with a numbing spray and before I knew it was out and dont remember anything other than waking up in recovery, I was taken back to the ward to recover. I had a visit from the dietitian to say they will start the feed slowly to see how it goes and depending on things I may have a permanent tube placed. I struggled eating supper because of problems swallowing with the tube. The nurse started my feed in the evening for twenty hours. I found it a strange sensation as the liquid went down the tube in my throat it made me feel a bit nauseous as it felt very odd. My throat felt sore when I swallowed. I wondered how I would sleep tonight.

Day 12

I slept better last night than I thought. Dr came to see me who works with my consultant he wants me to have some vitamins via IV. My nose was sore due to the rubbing of the tube. Dietitian came to see me and talked about if the NJ tube works they will put a permanent one in my tummy. They don't let you leave the hospital with a tube out your nose as it is not practical to manage. Friday the whole team are going to see me.

Day 13

Dr came to see how I was getting on and thinks I am doing well tolerating the feed. I had a visit from the psychiatrist and he thought I was doing well mentally and will see me again on Monday. I felt rough in the evening with my bowels, possibly due to the feed, I had an anti emetic injection as I felt really nauseous. 

Day 14

My bowels were still not happy, very crampy and my weight no better. I had to stop the feed last night as I felt rough. The gastro team came to see me, the pain they reacon is related to constipation and want me to have an x-ray of my tummy. They want me to re start the feed at a lower frequency as it may have been too much for me to cope with. I had my x-ray in the afternoon and someone from the team came to check on my strength with the hand held device I used when I was first admitted.

Day 15

Quiet day on the ward as it is the weekend. In the evening the nurse in charge asked me whether I had a four hour break from feeding as this is what should happen. I had been on the feed continuously so she wasn't too happy and stopped the machine to give me a break and we agreed to re commence early hours of the morning, however somehow not sure how but the tube came completely out, I was shocked and so were the nurses and being the weekend nothing could happen as it wasn't an emergency so will have to wait until Monday morning when the team come along to see what they say. I don't remember coughing or anything when it came out so it remains a mystery.

Day 16

Very quiet day again and I was free from my tube which was nice as eating was easier and didn't cause me to choke when I swallowed. I still dont know how it happened.  

Day 17

Gastro team came to see me and said that my x-ray showed it was clear on the left side but the right side had some faecal buildup so they will ask my Consultant about changing my medication to something else. They have booked me in for another NJ as I appeared to tolerate the feed at a lower rate. I had an MRI in the afternoon with contrast of my abdomen, I had to drink some lactulose with lime juice followed by lots of water over 40 mins so they can see my organs clearly. This had a big affect on my bowels and I had to go to the toilet twice while I was there. I had to lay on a table and a contraption was put over my body like a suit of armour, then I went into the tunnel and they scanned me, it was over quite quick and I went back to the ward to recover. My bowels were still bad all evening from having that drink.

Day 18

Woken up by having my blood taken and then nurse came to take my obs. I was shattered again. Dr came in the afternoon to cannulate me for my procedure tomorrow, it really hurt my vein when he put it in and he said it was sluggish so he tried it in a different one that went in a lot easier.

Day 19

A Dr had to re cannulate me as the nurse had problems flushing it through, it was a bit painful but not too bad, I told him about my veins and the pain I get. They took me to Endoscopy where I had to wait for a while, I don't remember anything about the procedure other than waking in recovery and being back on the ward feeling drousy.

Day 20

Dr came to see me in the morning and asked about the feeding and wanted me to have an ECG as I am starting on a new medication for my bowels. Nurse did an ECG and the Dietitian came to see if I had started on the feeding and how it was going. She wants me to increase the rate to 35ml/hr tomorrow as otherwise it will take forever. She wants me to try and eat smal amounts as I can manage and sit out of my bed to help with the bowels, they are still waiting for my MRI results to come through. 

Day 21

The gastro team came to see me and explained I have a complex constipation problem and are going to try me on another medication as well. I had a number of visitors which was nice but I was so tired. My neck muscles went into severe spasm and nothing helped. I had a severe migraine in the evening making me very nauseous and affecting my bowels. The nurse gave me some medication through my tube to stop me vomiting but it didn't make a lot of difference and felt rough all night.

Part 2 of the hospital diary will be available soon.


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