Monthly Archives: August 2021

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.

My 1st HG Pregnancy

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My Pregnancy with Sarah
Mild Hyperemesis Gravidarum

After I lost Charlie my mind would only concentrate on pregnancy and anything related to babies. I would look up how far along I would have been, id see expectant mothers and wonder if that’s what my bump would have looked like. And then id research into the newborn stage etc. I was so down and missed my baby so much..As a newly single young woman, I went through a whole host of one night stands and tried dating. In September 2006, a whole year after losing Charlie I met up with my now Husband Gavin on a blind date.  Our first date was a disaster but then we tried again on a second date. I had already started my nursing course at university but hated it and was still obsessed with the idea of having a family. This meant that the first time that I was intimate with Gavin I was not as careful as I should have been. I didn’t care if I got pregnant, I hated university, I hated nursing and I desperately missed my little boy. I discovered I was pregnant sometime in November. It started off just feeling ‘Off’. I felt icky, a bit like I had the beginning of a stomach upset or had a hangover. It didn’t clear up at all so I took a test and lo and behold I got a very strong Positive! As you can imagine, having only been with my boyfriend for just under 2 months, I was a little worried about how to approach the topic but in the end I just came out with it. I had been prepared to be a single mum, I was thrilled to have this baby and nothing would stop me having him/her but I wasn’t prepared for how pleased Gavin was. He was really excited and that shocked me.

The sickness didn’t begin as early as it has done in my subsequent pregnancies. I think it was around the 7 week mark that it really hit me but the nausea had been pretty intense. I had been completely unprepared for it having not had anything with Charlie. However I did find that eating small snacks helped. If I didn’t let myself get too hungry I could keep the sickness to a minimum. By this stage it was traditional morning sickness (NVP) not hyperemesis. It would affect me when I woke up before id had a chance to eat or drink anything. However by 9-10 weeks things started getting worse. The sickness was now at any point during the day. The nausea was unrelenting and I would feel dreadful all day. I think at that point I was vomiting about 5-8 times a day, however I managed to keep myself fairly well hydrated and I would have some days where I could eat and it would stay down. Things that helped me were salty crisps and fizzy drinks like coke. My midwife wasn’t at all concerned and told me this was normal so I didn’t worry. I don’t think she believed how nauseous I felt the whole time though. I had been given a midwife who specialised in teen pregnancy and I think she was used to over-exaggeration.

By 11 weeks things the sickness had become a nightmare, I was so nauseous all of the time, it started to affect my ability to eat. I would find it hard to physically swallow the food as I just felt so awful. The sickness had remained the same (vomiting no more than 8 times in a day) though having never heard of hyperemesis I found it really traumatising and I was constantly worried about my baby. I started having days when I couldn’t keep anything down including sips of water. I phoned the GP for advice and they told me the usual rubbish that morning sickness was perfectly normal and that I should keep having sips of water and dry toast/biscuits. I was trying so hard but nothing seemed to help. I would become so weak and unable to get out of bed. My blood pressure would drop and a couple of times I passed out. Gavin became increasingly worried and it got to a point where he didn’t want to leave me in case I got really hurt if I passed out. I had just started a nursing placement on the Stroke ward but it became impossible to cope. The smells were overbearing and I would frequently need to be excused to vomit. In the end I decided I couldn’t do this anymore and quit my course.

Things were at their worst in January, I remember being so sick I hadn’t kept down anything including water for 2 days and I felt like I was going to die. I called the GP again and spoke to the same doctor who said that I should be fine but to call back if I hadn’t been able to go for a wee in over 24 hours and they would then consider getting me some treatment. I had gone for a wee that morning so assumed I wasn’t serious enough for any treatment. I didn’t know what was wrong with me, I didn’t have a name for the condition.

Come February things got a bit easier, I started tolerating fluids and even small bites of food. I went to my GP after my midwife had found protein in my urine and thought I had a UTI and advised I go and get antibiotics. I saw a different doctor and she found ketones in my urine sample. She asked me about my sickness and I had explained what had been going on. She explained that she thought I had been suffering Hyperemesis Gravidarum. I was dumbfounded…I had been blown off my the other doctor twice and left at 18 years of age to just get on with it. No one had even suggested what I had been going through was not normal. She asked how I was coping and decided to prescribe me an anti-emetic medicine, it was metaclopramide syrup. I think she gave me it as a syrup as I was keeping down fluids but not much solids. I took the medicine and it did help me keep down a lot more. By 20 weeks, I was experiencing NVP not HG. I would vomit once or twice a day at maximum and even my constant nausea had gone.

The second trimester was so much kinder on me and I was able to continue on with the pregnancy. I struggled with anaemia and a lot of hip and back pain. But it was more like what I had imagined ‘normal’ pregnancy to be. Scans showed our baby was growing nicely, but we didn’t find out the babies gender. At around 32 weeks into the pregnancy my nausea increased again. The vomiting was still only a few times a day (3 or 4 times a day maximum).

I went into labour naturally at 39 weeks. It started on the evening of July 18th , I got dull period type cramps and my mucus plug began to come away. The morning of the 19th I thought I was in labour and warned Gavin to be on alert as I was getting regular pains. I managed during the day though noticed my body was unable to keep down any food. I did wonder if I was experiencing food poisoning as my bowels were very loose. Come the evening of the 19th I knew I was in labour for sure, I was restless. The contractions were regular, but I worried if I turned up too early at the hospital I would be turned away (I had heard horror stories). Gavin went to bed at about 11.30 pm and i laboured on my own til about 3.30am. The pains were becoming too much and I couldn’t cope on my own anymore. I had already had 3 baths (I would later get complaints from my neighbour downstairs that I had kept her awake all night, as she had heard me). Gavin helped me through the contractions but noticed they were lasting longer and coming much more frequently and so phoned the labour ward for advice. They said to bring me in straight away, we got to the hospital at about 4.30am

I was examined and found to be 4cms dilated, I requested an epidural as I was frightened of how much worse the pain could get and given entonox whilst I waited for the anaesthetist. After my epidural was put in it worked partially, they were about the replace it but found my babies heart rate kept dropping. Doctors decided to speed up my labour as the baby was getting tired. They broke my waters for me. The epidural by this point did not work at all. Within the next hour I went from 4 to 6 cms at the next check. Then I felt like I needed to go the toilet, I was checked again and found to be fully dilated to 10cms. I was told I could start pushing. It took me just under 3 hours to push Sarah into the world. I was so proud of myself, at the age of 19 I had survived hyperemesis gravidarum and pushed out our daughter with only entonox! After Sarah was out, I had no more nausea or sickness, I enjoyed tea and toast whilst we blissfully took in the fact that we were actually parents. At the time I thought this pregnancy was hard, and in a lot of ways it was. Whilst my HG had been mild, it was still a lot harder than normal morning sickness. I didn’t think anymore about the pregnancy and what we had endured to get Sarah, I was so grateful to have got my beautiful baby. After having lost Charlie I felt so blessed to have this little girl! Having not known about Hyperemesis Gravidarum, I didn’t even consider I might get it again in future pregnancies, no one had told me anything more. Even my midwife had been fairly clueless about it. It frightens me to realise that even as recently as 2007, there was so much ignorance concerning HG, so many people had no idea that someone could become so sick in pregnancy.

During my pregnancy I hadn’t been weighed by any of the medical professionals, i didn’t even weigh myself, I do think I lost a few pounds in the first half of the pregnancy. Because after Sarah was born I was 2lbs less than what I had weighed in the beginning. Whilst I had been officially diagnosed as having Hyperemesis Gravidarum, it was at the very mildest on the spectrum compared to my subsequent pregnancies.

Sarah Louise Stevens
Born 20th July 2007
at 8.40am
7 lbs 8

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.

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

Welcome to my Hyperemesis Gravidarum Blog!!

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Welcome to my Hyperemesis Gravidarum (HG) Blog! Im Michelle, from the UK and am 33 years old with 3 children

I have gone through 3 HG pregnancies and 1 HG loss and feel that there is just not enough support and awareness of this awful condition. And even less knowledge about the after effects to both mother and baby after a hyperemesis pregnancy. I decided to write this blog and share my experiences with both Hyperemesis Gravidarum and also its after effects on my health.

The hyperemesis in my 3rd pregnancy was so severe that I needed multiple interventions to keep me alive including the use of steroids, PICC Lines, Daily IV fluids, TPN and feeding tubes. In the UK some of these interventions were practically unheard of in an HG pregnancy, when I reached out for support there were so little resources and experiences available. I decided that if my story or experiences could even help just one person feel not so alone then it would be worth sharing. So here I am writing this blog; hoping that it will educate, promote awareness, validate the suffering of women with HG but most of all give hope to anyone going through this hell, that there is light at the end of the tunnel. That your suffering is not for nothing and that little bundle of joy is worth every second of this sinister condition.

You never know how strong you are until being strong is your only choice!