Category Archives: Gastroparesis

HG Reality Quote

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One of my dear HG friends is making reality quote pictures for HG awareness and I thought I would share mine on here!

I find it frightening how one day I can be perfectly fine and then the next I find myself so sick with Hyperemesis. Had I known that for the next 2 years I would not have a single day where I didn’t have at least one episode of vomiting, I think I would have seriously contemplated ending the pregnancy right then and there.

Hyperemesis Gravidarum is hell but the nightmare it left behind has been the most traumatising. You expect to make a full recovery when you have your baby in your arms and for most women this is how it is. But for a small number of us, things don’t return back to normal and we are left with medical and mental health complications that can be long term or even life long.

You take each day of hyperemesis as it comes knowing that you are one day closer to that feeling of pure bliss where you have your baby in your arms and you are feeling so much better. The nausea is gone and vomiting a distant memory. So imagine if you are expecting this and holding on dearly for that! You get to that special day and you have your beautiful bundle in your arms but the vomiting hasn’t gone and you are still feeling that awful nausea! You panic! Doctors reassure you to give it time, its hormonal and it will settle as the pregnancy hormones leave your body!

You give it time, a week goes by, then a month and before you know it a whole year has passed and yet you are still experiencing nausea and vomiting. You are still suffering despite there being no chance of you being pregnant. Imagine being stuck in that nightmare!

It took 15 months after my baby was born before I finally got a diagnosis, nearly 2 whole years of vomiting daily to learn I now have gastroparesis. But whether HG caused that or the feeding tube injury we will never know. It is possible it is a condition I already had but made worst by pregnancy. I will never have the answers, I just know that one day I was fine and the next I became sick and that sickness didn’t end even after the HG ended!

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/

 

Still Sick after Hyperemesis (part 2)

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I am now 14 months after having my baby, I should have been free from the HG symptoms for well over a year now. But my sickness is ongoing and I’m yet to have an official diagnosis, though my consultants are 99% sure I have gastroparesis. This is what life is like for me currently:

My Symptoms to date
~ Lack of appetite and food aversions
~ Feeling full quickly after eating
~ Severe nausea throughout the day (particularly after eating)
~ Bouts of vomiting (between 2-5 episodes a day on average)
~ Stomach pain, especially after eating. It usually gets worst, until I vomit
~ Dizziness and energy level drops
~ Acid reflux
~ Low mood and anxiety
~ Weight loss

How it affects me on a daily basis
~Never being able to eat out in public, go for a meal or have dinner with friends
~ Fluctuations in energy, depending on whether my food is digested or just sat in my stomach
~Difficulty maintaining a stable weight. When my vomiting is worse or my stomach not digesting I can lose weight.
~Malnutrition. I have to rely on a lot of supplements and vitamins to keep up with all the micronutrients that my body isnt getting from the food
~Electrolyte imbalances. It is quite easy for my electrolytes like sodium and potassium to get low from where I am sick so frequently
~Dehydration. If the vomiting is particularly severe or I am in a flare up, I will sometimes struggle to keep down fluids. During these times I may need IV fluids to stabilise me until I can tolerate oral fluids again
~Pain, most meals I eat gives me pain under my ribs on the left hand side. It varies in severity. Often this pain is relieved when I am sick, but sometimes it can go on for longer
~Nausea, though I have antiemetics they do not help my nausea. This can be really hard to deal with and leave me often wishing I would be sick to end the prolonged nausea
~ Not wanting to go out for fear of vomiting in public or being unable to get to a bathroom
~ Feeling low at these ongoing symtoms and worrying that they will never go. Often this condition can get me so down I wish that I had never made it through the pregnancy. I would wish to die just so that I can be free of this prolonged hell.

It is now 22 months since my sickness started (started as HG) that I would still find myself suffering nausea and vomiting on a daily basis. I desperately wish and pray for a relief or cure for this condition.

But how can hyperemesis gravidarum continue despite no pregnancy? Well for me, it didn’t continue..it changed from pregnancy sickness to a sickness condition. This is not hyperemesis gravidarum, this is most likely Gastroparesis. And to get it from HG is so rare, don’t let my story scare you. One of my doctors theorised that I may have got this gastroparesis from the time my feeding tube became dislodged and coiled from my jejunum back into my stomach. At the time, it caused a lot of pain..so much so that I was given entonox. It is thought that this dislodged tubed caused damage to the nerves in my stomach which is why my stomach paralyses.

It is also possible I already had this condition mildly but that the pregnancy just made it worse, as I already had bowel motility issues from before pregnancy. I will never truly know whether the HG was a direct cause of the gastroparesis I now suffer.

My hopes now are to get this condition formally diagnosed so that I can begin treatment so that I can finally have my life back. I could look back and be bitter at the time I should have spent enjoying my new son being completely ruined by this sickness condition, but I cannot change the past. I need to move on from this and focus on a healthier future and if that means learning how to live with this condition then that is what I must do but I refuse to be beaten by it.

Still Sick After Hyperemesis (Part 1)

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After my csection I was gutted that I was still reliant on my feeding tube. I really thought after my baby had been born, I would be feeling much better and certainly able to eat. Here I was hours after birth and completely unable to eat or drink, feeling just as nauseous as when he was in my tummy.

I was reassured that it was the shock to my body after the surgery and it would be temporary, so though frustrated I was patient! Then the next morning I almost died of a septic shower, food was not a priority. During my time in intensive care I was reliant on drips and my feeding tube but before they would discharge me they wanted me to be eating solid food. My first meal consisted of a cheese sandwich, a pot of jelly and cup of orange juice. After 9 months of not eating…what a really underwhelming meal!! It was a total disappointment and what’s more it didn’t even stay down. Doctors on ICU were not concerned, after all the antibiotics I had for the sepsis it wasn’t surprising my body wasn’t tolerating any food. They believed that when I got home and was able to relax I would start feeling better and tolerating food.

I was finally discharged from hospital, but my sickness still hadn’t gone. Unlike hyperemesis where the nausea and vomiting was uncontrollable and constant, this I noticed was after I had eaten I would eat something and feel really sick and full really quickly, then a while later I would vomit the food. The time between having eaten to when I would get sick would vary quite a lot. At first I wasn’t worried, my consultant told me that after what I had just gone through with the pregnancy and then the sepsis it was likely that over the next couple of weeks these symptoms would fade. That the pregnancy hormones were still playing havoc with me and that as they decreased in level so too would my nausea. This made sense to me, I wasn’t concerned and Ollie was still in Neonatal Intensive Care so I had other priorities and worries. I assumed that as things settled down I would start feeling better. The stress of Ollie being so unwell definitely wouldn’t be helping

Things didn’t get better though, and my symptoms were very random. Some days I would not get sick until hours after the meal (often waking during the night to vomit) and then there were days where I would not even finish a meal before an episode of vomiting would happen. I would also get pain in my stomach, even after just a few mouthfuls of a meal. Ollie finally came home but was still quite poorly and I had the hard task of trying to get him to feed and put on weight. The sickness didn’t get worse but it didn’t get better either. It remained the same every day.

4 weeks after the birth of Ollie, my midwife was about to discharge me and went through all the necessary checks. How was my scar doing – it had healed really well. Was I still bleeding? Yes. How was I managing with feeding Ollie etc. It came up about my sickness still being there. She had noticed how down it was getting me. After all I had expected the HG to vanish after the birth and yet here I was 4 weeks after Ollie’s birth and still vomiting. She was quite concerned and had not heard of HG persisting after birth and urged me to speak to my GP about it. My GP did not seem too concerned at this point, he thought it might have been because I was breastfeeding Ollie and that the hormones responsible for producing milk were responsible. He was certain I would be feeling better soon. I was instructed to eat small meals and keep taking my anti-emetics. Though I was frustrated I followed the medical advice to the letter, desperate to start getting back to normal. But nothing worked.

At 8 weeks after the birth, I had my postnatal check up and Ollie had his checks and first set of immunisations. When I spoke to the doctor and described my symptoms and how I was still losing weight (albeit slowly) he was very concerned. He referred to the gastroenterology department at the hospital. My community dietician who had been involved with me during the pregnancy had been really helpful and given advice on what kind of meals to eat, they also prescribed me some nourishing milkshake and soup supplements to boost my nutrition. These supplements helped maintain my weight, when I flared up and was unable to eat I would have more of these supplements

By December 2020 (6 months after birth) my gastro consultant, with the dieticians were certain that I was suffering from gastroparesis and started organising some tests to prove this. Due to the pandemic it has been a long wait to get these tests done and even to this day (August 2021) I still haven’t had a formal diagnosis though have had some of the tests.

Still being so unwell despite the pregnancy being over has taken its toll on my mental health. I haven’t been able to move on past the HG because its still not over. It gets me down that I’m still struggling with these awful symptoms. Ollie is now 14 months old as I write this blog. I am still as poorly as I was after delivery. My sickness is still the same, it is not worse but it is no better. The covid pandemic meant that all my investigations and referrals have taken twice as long, but it had now been 22 months since I started being sick daily (starting with HG). Until I get a formal diagnosis and a treatment plan I cannot process what has happened to me. I know that there is a lot of raw emotion and trauma but I just don’t feel like I can face it at the moment. The thought of facing what has happened to me this last 2 years is too overwhelming at the moment, I’m dreading the day when I have no choice but to face it.

50% Weight Loss

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Today I discovered sadly that yet again I have lost more weight and that my weight loss has now tipped over to 50% total weight loss since October 2019 (when I first got pregnant).
During the hyperemesis I lost 108lbs in weight (7 stone 10lbs) and went from BMI of Obese (41) to Normal (22).
Since pregnancy ended my vomiting continued and I likely have gastroparesis (still awaiting final diagnosis to confirm). I have daily vomiting but just not to the extent that I did during HG. Now it is mostly related to food unless I’m in a flare up. Its been so hard to keep my weight stable, I tend to lose a little, get prescribed extra supplements and then put on a few pounds again and I yoyo. Normally my weight is 133lbs but can go up or down by about 4lbs. However my symptoms have been particularly bad this month and my weight has steadily gone down and I am now 120lbs which is my lowest ever!
Since pregnancy ended in June 2020 I have lost nearly 10% of my weight to this new sickness condition, which is quite a concern as my doctors are not wanting me to lose anymore. But it does mean that since October 2019 I have lost a total of 50.21% of my original body weight to sickness.

I have a Gastric Emptying Scan later this week which I am hoping will finally confirm my diagnosis, though doctors are 99% certain I have gastroparesis after a gastroscopy showed food debris in my stomach 13 hours after fasting, showing a definite motility problem. Once I have my diagnosis I am hoping there will be a treatment or surgery they can give me to help get this vomiting under control so that I can finally have a normal quality of life and actually keep a meal down.