Tag Archives: Causes

Final Diagnosis and Tube Referral

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So weeks after these were due I finally have the result of my gastric emptying scan and to be honest I was pretty shocked by them! I thought I had a motility problem but I just didn’t realise how bad it was.

It seems that during the time I was at the hospital for the gastric emptying scan the food barely moved at all, there was only a tiny amount that was digested that they couldn’t measure it precisely. With the pictures and data they collected Doctors could see that it would take my stomach 910 minutes to half empty. The average person takes between 43-115 minutes to half empty so my stomach was significantly slower than it should be. My GP had the results before the consultant and diagnosed me with severe gastroparesis, with this result, my symptoms and my continued weight loss he has suggested a feeding tube. My dietician also suggested this and asked for me to be referred to endoscopy for a feeding tube placement.

I don’t know how I feel about ‘needing’ a tube, I feel upset with myself and my stomach for not working properly and i’m frightened about having to rely on a tube again and not eat normally. However it has been a long time since I have been able to eat properly anyway. I have to avoid eating in public or going out for meals with friends and family because I can end up vomiting so I often avoid it or take double of my medication. If I take double medication, It can stop me vomiting (until the meds wear out) but it doesn’t stop me getting the same excruciating pain I usually get. It is so much easier to vomit sooner and end the pain quicker than delay the vomiting and have to deal with the agony until my the medication wears off and I end up vomiting hours later. So eating ‘normally’ has already been something that I cannot do.

I worry about the procedure of the tube itself. My dietician is thinking they will give me a gastronomy or gastro-jejunal tube (G-tube or GJ tube), which is surgically placed and comes with quite a long recovery. I worry about how I will cope with the pain of it, especially with a little toddler running around.

On the other hand I really welcome having some nourishment back, being able to feel like I have more energy. Not getting enough nutrients is affecting my body in lots of different ways: My periods have not come back since the birth, early onset menopause, thin and dry hair that breaks easily. My nails are brittle and break easily. I am ALWAYS so tired and cold, I have to wear 3 layers of clothes inside and 2 pairs of socks, even with the heating turned on. My hips hurt when I sit on a hard chair/bench or in the bath. Laying in bed is uncomfortable where I have so little fat. I am so irritable and my mood is so up and down. I am prescribed medication for my mental health condition but it doesn’t always stay down so my mental health in uncontrolled. I hate how I look now, I don’t look healthy and always have such heavy eye bags. Having the tube giving me some nutrients can improve all of this for me and give me such a better quality of life, so I welcome the idea of this.

In the last few weeks my weight has continued to drop and I hit a new low of 115lbs, my GP has asked that I get an expedited urgent appointment for this tube, so now I am waiting for an urgent appointment with my gastroenterologist to discuss the need for the tube. In the meantime he has doubled my erythromycin medication. Unfortunately I don’t find this medication helps me at all and i’m allergic to metoclopramide and domperidone! However due to the delay in appointments because of the pandemic I have been warned that even urgent appointments are taking a long time. I just hope its soon because I am really struggling now, this condition is getting me down! For nutrition I have Fortisip milkshake supplements that contain minerals and are full of calories but I often struggle to keep these down as they are quite heavy on my stomach.

Tests & Investigations: Gastric Emptying Study

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In August this year I had a gastric emptying Study. This is a scan to watch how long it takes for the stomach to digest food and so determine if there is a motility problem. The patient has to eat a meal within a set time that has a radiated isotope injected into it. Then the patient is scanned at regular intervals and pictures and measurements are taken.

 

 

 

 

 

 

 


Before the test I was required to fast (usually it is 4 hours before the test) but because I had a history of having food left in my stomach hours after fasting, I was advised to not eat anything after my last meal the night before. I was also not allowed anything to drink 3 hours prior to the test. Food and liquid in the stomach can distort the results. I had to stop certain medications a week before the test such as omeprazole, this is because they can alter the motility of the stomach and could effect the rate of digestion and give inaccurate results.

On the day of the scan I arrived at Nuclear Medicine Department feeling very nervous, I had had my antiemetic medications hours earlier, as any vomiting will mean the test has to be cancelled and rescheduled. The nurse then made up the ‘meal’, she added a syringe of the radioactive isotope to some porridge. I was told to put on an apron and gloves (so not to get the any radioactive food on my skin).

I then had 10 minutes to eat as much of it as I could. I managed most of it but felt uncomfortable as there was a lot of it. I personally didn’t mind the flavour as I am a fan of porridge (this was Ready Brek, even tastier) but I did struggle not to gag as it was lukewarm, not hot! Gobbling it down so quickly was quite hard too!

As soon as I had finished I was asked to stand in between the 2 plates of the scanner. I had to stay very still for 30 seconds whilst they took a picture. Then I would sit down and wait for the next picture in 10 minutes time. From 1pm until 3pm I had scans done every 10 minutes.

My tummy (1st Scan) after just eaten

 

The doctor who was reviewing the pictures behind the scene then made a change to this routine. Nothing had moved in my stomach that whole 2 hours!

I was asked if it would be possible to wait an hour and half and then come back. So I waited in the waiting room and read my book. Then at 4.30 I came back and did one last scan! From the pictures I took, it looked like there was still food in my stomach. I asked the radiographer who was not officially allowed to comment but said that there was still a lot of food left and this was obviously the reason I was there.

My Tummy (Last Scan) Food is settled but still there

So I already knew from his reaction that there was a motility problem. I was told the results had to be processed and would then be sent to my gastro doctor. I just had to wait to hear from them.

As tests go, this one was not painful and was relatively easy. The only discomfort was from my condition (pain and nausea from eating the food). I was advised to keep away from the baby for the rest of the day and any of the breast milk I expressed could not be given to him for 24 hours as there is a chance of a small amount of radiation being in it.

Thankfully it wasnt needed!

Tests & Investigations: Bloods and Gastroscopy

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Tests and Investigations: Bloods and Gastroscopy

So far to date these are the investigations I have had:

Blood work
I have had lots of blood work done to rule out potential postnatal problems that may cause nausea and vomiting such as postpartum thyroiditis which can affect up to 5% of women after the birth of their babies. This can give symptoms of nausea and vomiting. This is more likely if you have a pre-existing thyroid condition. As I had already suffered with Hypothyroidism since 2007, I was at a greater risk of having this. My blood work was also to rule out any other imbalances, conditions or infections I may have got after delivering my baby. My blood work showed I had an increased calcium level and that I was deficient in a few vitamins and minerals. To this day it was unknown what caused my elevated calcium level. It was back to a normal range at the next blood test. However electrolyte and vitamin deficiencies are very common in patients with prolonged nausea and vomiting. I was prescribed replacements to correct the imbalances and monitored. 

Gastroscopy
In February 2021. I had a gastroscopy, this is a outpatient procedure where doctors will look in the stomach with an endoscope to look for any obstructions or abnormalities that could explain what would cause the nausea and vomiting. An obvious cause would be if there was a blockage or physical problem within the stomach such as an ulcer. I chose to be sedated for this procedure after having a very traumatic NJ tube endoscopic surgery which I still get flashbacks to this day from.

During this procedure I was instructed that I was not allowed to eat 8 hours before and not allowed to drink 3 hours prior the the procedure. After arriving at the endoscopy unit, I had my vital signs like temperature, blood pressure checked. I had a cannula inserted into the back of my hand and then taken through to the theatre. I had some local anaesthetic sprayed to the back of my throat. This was fairly unpleasant. And then had a plastic mouth guard put in my mouth to hold my mouth open. I was then given the sedative (Midazolam) through my cannula. I do not remember anything more, as this made me completely sleepy. It is not like a full anaesthetic where you are completely under but sleepy enough that you cannot remember the procedure. Some people chose to stay conscious for this, making the recovery a lot quicker. Having the sedation means you need a responsible adult with you for 24 hours after and cannot be in charge of children etc.

During the gastroscopy whether you are sedated or conscious the endoscope is put in your mouth and down your throat and will look at your digestive tract and in your stomach for signs of abnormalities. The doctors will take picture and biopsies which can be later seen under a microscope to look for conditions like crohns disease and cancer. I had 6 biopsies taken, which came back as normal.

Despite having had nothing to eat for over 13 hours the doctors discovered food still in my stomach which was signs that I had delayed gastric emptying. This could be a sign of a motility problem such as gastroparesis which would cause the symptoms I had been having. The doctors also noted that I had some atrophy to the antrum part of my stomach. This could be a sign of a condition called Gastritis but also a sign of my prolonged vomiting.

Photos taken during my gastroscopy

After the procedure I was wheeled to recovery and once awake, my vital signs were monitors for 30 minutes. Once fully awake, my cannula was removed and I was allowed to leave once someone came to collect me. I made a quick recovery but was a bit tired for the rest of the day. The sedation is quick acting but can make you very sleepy for the next 24 hours.

For me the most difficult part of this was procedure was being back in the same endoscopy unit, at the same hospital I had my NJ tube put in. I had a very traumatic time where I awoke from an endoscopic surgery to stitch a feeding tube into my jejunum and it brought back a lot of bad memories of pain and being held down. It was quite hard to face but I had to get on with it as this was an important step into diagnosing my current problem. After having a bit of a cry and a chat with the nurses, who were fantastic and very reassuring I was able to get the courage to go ahead with the gastroscopy. The procedure itself went well, I had no pain and don’t remember anything. But it is worth saying that there are a few small risks when you have this done. You can get a bit of a sore throat, and there are small chances of injury or bleeding from the scope, however this is rare. I had no after effects.

Because of the results, it was decided the the delayed gastric emptying needed further looking in to and so my consultant then referred me on for investigations into how my stomach was digesting food. I was put on the waiting list for a gastric emptying study.

My Gastroscopy Report

For more information about Gastroscopies please visit:
https://www.nhs.uk/conditions/gastroscopy/what-happens/

 

What is Hyperemesis Gravidarum

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What is Hyperemesis Gravidarum

Hyperemesis Gravidarum (HG) is severe and excessive nausea and vomiting in pregnancy that can affect approximately 1 in 100 pregnant women. But how can someone tell when it’s hyperemesis and when it’s regular Nausea and Vomiting in Pregnancy?

HG is diagnosed by doctors when:
~ Nausea and/or Vomiting doesn’t subside and is constant
~ Nausea and/or Vomiting is preventing adequate nutrition/fluid intake. Patients often become malnourished and/or dehydrated.
~ There is weight loss
~ Electrolyte imbalances

Here are some differences between NVP and HG, as illustrated by The Pregnancy Sickness Support Charity

How long does HG Last?
For a lot of HG patients, their sickness significantly improves between 14-20 weeks in pregnancy, sadly however there are some women who suffer the entire pregnancy.

But what causes HG in pregnancy?
Not a lot is known about why some women get more sick than others, but scientist believe there are a few possibilities that cause it. One of the theories is genetic component GDF15, another is to do with a rapid rise in the hCG hormone (human chorionic gonadotrophin). There are also theories that the thyroid can play a role in the the causes of hyperemesis gravidarum. Whatever the cause HG is seriously hellish

But forgetting the label. Any sickness in pregnancy is miserable and can really affect the mental health of the sufferer, especially if it is ongoing. Its important that whether you have HG or NVP that you reach out for support. You don’t have to suffer in silence there are so many things that you can try to help. Medications can help as well as other things that your health provider can discuss with you, but also talking support to deal with the low mood and negative feelings that constant nausea and vomiting can bring. A very good source of help for me was from the Pregnancy Sickness Support Charity who organised a peer worker for me to talk to, and there was also a very good forum where I could ask questions and talk to people in a similar situation.

Credit:
www.pregnancysicknesssupport.org.uk
www.rcog.org.uk