Tag Archives: Hyperemesis Aftermath

Remembering my HG Loss; Angel

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Today, (21st October 2021) is the13th anniversary of my little ones death. ‘Angel’ was my sons twin, he/she died at 9 weeks into the pregnancy due to the severity of my hyperemesis gravidarum. I only started receiving IV fluids and IV medications at 9 weeks into my second hg pregnancy, the morning after, we found out that one of our little ones had passed away.  I cant help but wonder if I had received more help for the hg, would I be blessed with twin 12 years old instead of just one?

Today I look back to my 2nd HG pregnancy during 2008/9 and think how badly I was looked after by the health care professionals, especially compared to my 2019/20 pregnancy. I was only 20/21 and despite having suffered HG before, was neglected and left to look after a toddler all the while severely dehydrated and deathly ill. My condition became so bad that I went into early liver failure on several occasions. In the end my liver was the reason I had to deliver Joshua prematurely. Throughout that pregnancy I was denied strong anti-emetics like ondansetron until well over 20 weeks despite multiple admissions to hospital and practically begging for help!

How is it I was allowed to get so poorly that I lost one of my babies? That I went in to early organ failure? And that I could be denied such a lifesaving drug for so long despite being so unwell??

Sadly this situation wasn’t rare or even uncommon, especially back then. Since Kate Middleton brought light and awareness to this awful and debilitating pregnancy condition, things have started to improve. But there are still some hospitals and doctors who are refusing medications like ondansetron to women who need it, for uninformed reasons.

Many GPs and hospital doctors do not like to give out medications that can increase the risk of congenital abnormalities to the foetus. It was always believed the Ondansetron increased the risk of cleft lip/cleft palate. And in truth there is a very slight increase in risk. But the risk is tiny.

In every 10,000 normal pregnancies there are 11 babies born with cleft lip/palate

In every 10,000 pregnancies where a woman has used ondansetron there are 14 babies born with cleft lip/palate.

Thats an increase in 3 in 10,000…when you compare this to the risks to the baby when the mother is dehydrated and malnourished, its seems tiny and insignificant. Personally I feel that as long as the risks have been properly assessed and the mother informed then it should be her choice to take medications like this. They may very well be a life saver for her and her baby! Would my baby be here if I had been allowed Ondansetron?

So today I think about all the women who are still left to suffer without the proper help they need to deal with their HG. To the women who sadly lose their babies to HG.

Did you know that the chance of pregnancy loss in an HG pregnancy is 1 in every 3. So one baby in every 3 HG pregnancies wont make it to birth.
Many women feel they cannot continue and are forced to terminate their wanted pregnancies because they cannot cope with the symptoms of HG. 5% of all terminations account for women who couldn’t deal with their pregnancy symptoms. That’s a huge amount!

I believe its time that women are supported, its time that doctors and health care professionals listen to the struggles of women and actually help them control their nausea and vomiting for the sake of all the beautiful little ones lost because of this insidious condition.

If you need help with you symptoms of nausea and vomiting. Or if its become so bad that you feel your only choice is to terminate. If your health practitioners are not taking you seriously I urge you to contact the pregnancy sickness support charity who can help advocate for you and give you some support to help you deal with your symptoms. They are non-judgemental and will LISTEN.

https://www.pregnancysicknesssupport.org.uk/get-help/

Please reach out for support, you don’t have to face HG alone!

R.I.P Angel
R.I.P all little ones lost to Hyperemesis Gravidarum!

You will never be forgotten and always remembered!

 

 

 

Hyperemesis Gravidarum & Mental Health

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Today is World Mental Health Day 2021 and I thought I would just post about how much mental health can take a hammering with constant nausea and vomiting from both Hyperemesis Gravidarum and Gastroparesis.

During a HG Pregnancy

It is hardly a surprise that Hyperemesis Gravidarum can take a major toll on a woman’s mental health whilst she is suffering. The random and frequent nature of vomiting and constant nausea can leave the sufferer house bound, too worried to be far from the bathroom in case an episode of vomiting occurs whilst out. This can lead to feelings of isolation. Not being able to take part in social activities with friends and family..

The feeling of not being able to enjoy pregnancy got me down whilst I suffered HG. Women were meant to be ‘glowing’ and enjoying their pregnancies. I always felt like people thought I was ungrateful which couldn’t be further from the truth. I desperately wanted my baby but hated feeling so awful with no break from the 24/7 nausea. The only time I had respite was when I slept and even then if my stomach filled with bile/acid it would cause me to wake to vomit. This would cause disrupted sleep which would add to making my mood even lower.

Being always in hospital would make me anxious and low, I hated being away from my husband and children. This was even worst when covid hit and I wasn’t allowed any visitors.

Then there was the anxiety that this constant sickness would hurt my baby in some way. Would the malnutrition and dehydration cause physical or mental abnormalities in my unborn baby. How would it survive without nutrients. This is turn led to guilt. I would feel like it was my fault and that I was responsible for my husband and childrens worry about my health. The guilt of not being a proper mum (cooking their dinner, helping with homework etc). The guilt of what I may be doing to the baby I was carrying.

The guilt, misery and feeling sick 24/7 would leave me wishing that I had the guts to terminate the pregnancy or even worse, wishing I would miscarry. Then I would feel hideously guilty for daring to think like this. I have gone through several miscarriages and a stillbirth, of course I would never want this for my baby! I loved my baby, he/she kept me going through this hell. I didn’t really want them gone just the dreadful HG. But I hated myself for my sinister thoughts, there are women who would do anything for a healthy baby and there is me wishing mine away. But this is how hideous HG is. You feel that unwell that you have these awful thoughts, you are so desperate to be out of this horrific state that you get to wishing your precious baby away. But its not really wishing your baby away, its desperately wishing that feeling so awful will end. You feel so guilty at your thoughts you end up wishing you would die so that at least you could be out of the physical and mental suffering. I would think, at least if I died I would be away from feeling so terrible but I wouldn’t be guilty of wishing my own baby gone or wanting to terminate. I would even plan my suicide. Wondering what to do to cause the least damage to my husband and children. Desperately praying that the HG would just hurry up and take me so I didn’t have to do it myself!

Physically feeling so dreadful and low blood sugar leaves you irritable and angry that you are suffering and that people are getting on with their lives. You end up resenting those who have easier pregnancies, wishing people knew what it felt like. Your thoughts turn increasingly bitter and angry. All the while being so sad that you cant enjoy the pregnancy, and all the positive things that go with it, baby showers, gender reveals, getting excited over baby clothes. Instead you are either hunched over a bucket or the toilet or in bed praying for the nausea to just stop!

As the pregnancy continues and the symptoms of HG don’t subside your mood gets lower and you wonder how much more you can put up with. You worry that you wont bond with your baby. How can you love something that has brought you so much suffering? People don’t understand, they can comprehend sickness at the beginning of the pregnancy. In fact most pregnancies involve some nausea and vomiting. But this is a different level, and very few people can grasp just how bad it is. People think they know what its like, everyone has times of nausea and vomiting. But very few people truly know HG. To know HG you have to have suffered from it!

People grow tired of hearing your suffering/praying for you. Their patience ends, some even feel like you are exaggerating. You feel desperately alone with your suffering. And the biggest feelings of life being so totally unfair? All you can think is ‘Why me?’, what did I deserve to get this. All logical thoughts of genetics and hormone intolerances go out the window and you just feel bitter to everyone who isnt feeling just as horrid as you! HG is a vicious ball of misery!

After a HG Pregnancy

Sadly some women arent able to hold on and have to accept that they can no longer carry the pregnancy and are forced to terminate. This comes with its own feelings of loss and sadness. I have never terminated a pregnancy so cannot comprehend just how terrible it must feel to have to go through that. However having lost a twin to HG, you never get over the guilt of feeling, if my body could just have been stronger, would my baby still be here? It is hard to see that you did an incredible job and that life can be unnecessarily cruel. To go through HG and come out without a little bundle of joy is so hard. How can life/God be so awfully cruel and unfair?

After the HG has ended, people expect everything to be ok! You have your baby, for most people they no longer feel sick at all. So people just expect you to be happy and grateful! No one tells you that sometimes you don’t immediately bond with your new baby. Sometimes you don’t feel that immediate bliss. Sometimes you don’t feel better. Sometimes your struggle isnt over if you have postnatal complications after birth or if your child is born with health issues.

After your baby is born you are left with the aftermath of the pregnancy, you are left wondering why you had such an awful pregnancy and will it be the same if you have any more children. No one ever talks about the trauma that is left behind. The flashbacks and feelings of failure. The absolute paralysing fear you may get when you have a stomach upset and those feelings of panic that you might be pregnant.

Hyperemesis can leave you with long lasting depression and anxiety. You are far more likely to have postnatal mental health problems after going through a HG pregnancy but there is no support. You try to talk to your partner or friend and they cant understand. HG is in your past but people don’t realise that you have to deal with it and process what you went through. Going through HG, you have to take things  minute by minute, its not possible to deal with the emotional side until you are through the other side. But this is when people are least understanding. You have the role of mum, you don’t have time to deal with your own baggage as you are too busy looking after this demanding little baby..

One of my biggest struggle after I had given birth is knowing I wouldnt be able to have anymore children. We always wanted a big family, and had hoped for 4 children! But to have any more children would be too dangerous for me. It might be fatal next time. I also had so many health problems after I gave birth. These include, infertility from premature menopause, cPTSD (complex post traumatic stress disorder) and gastroparesis. I was left feeling very depressed that what should have been a happy time in my life was cruelly snatched away from me. To this day I still feel resentful at not having a good pregnancy, at having to spend most of my pregnancy in hospital, attached to tubes and drips! And I still battle with the feeling of great unfairness! As soon as I go anywhere near the hospital I get episodes of intense anxiety and panic and I get flashbacks of my times in hospital.

I have no answers for you dear reader! Im sorry I have no advice other than to take one day at a time. Going through HG is not a small feat! If you have gone through it, then you are incredible but be gentle with yourself and know its completely ok to not be ok!

 

***Its ok if you are grieving for the good pregnancy you didn’t have, you need to mourn it!
***Its ok to be sad that you did not get to experience the joyful pregnancy events, it is sad that you were too unwell to enjoy things
***its ok to be angry that this happened to you, its unfair!
***its ok that you didn’t feel bliss when you first saw/held you baby…the love will come!
***Its ok that you panic when you feel sick, it must bring back so many terrible memories
***Its ok to cry at all the things you missed out on when you were sick..you need to grieve the things you missed out on!
***its ok to resent other peoples pregnancies..life can be cruel, no one deserves to suffer! But remember just because you cant see them suffer, does not mean that they are having a good pregnancy
***Its ok if you became depressed or anxious after your baby was born…its is not a surprise you are struggling after everything you went through!
***Its ok if you did not recover from HG after the birth…it takes different people different times to recover. Take things slow and be kind to yourself!

Do
– Seek help…you don’t deserve to suffer, your mental health is just as important as your physical help..whether you look in to hypnosis or counselling…get professional help to get through these difficult times. If you need medication, this is ok too! Accept any help you can to get you through this.
– TALK…it is good to share your feelings, you deserve to have your experience validated! Speak to your GP or get some counselling to talk through your experience and how it has left you feeling. You deserve to be able to process your experience and have help getting through this
– Be honest…if you are depressed, anxious or suicidal…there is nothing to be ashamed of, you have been through so much but now is the time to admit this and get some help, you are worthy of help and deserve to feel better
– Be gentle with yourself…it will take time for you to feel better. Do things that help you get through this tough time. Make time just for you to do something to help your mood, whether its reading a book, getting a manicure. Anything to give yourself a treat!
– Be patient…it will take time to process what you went through, do not rush through this process. It is better to take things slowly and process it properly than rush through things only to bury them in your subconscious where they may appear one day in the future if you have not dealt with them properly!
–Be Kind!..going through HG and the aftermath of HG is awful but remember that many people are going through individual struggles too!
– Communicate…tell people what you need from them, whether its a chat or whether is it something that can help you through the day, like child care or picking up groceries. Generally people just want to help if you are struggling. Let people know what they can do to help you

Don’t
– Be Ashamed…you are a strong person but even strong people need help and support from time to time!
– Compare you HG journey and its aftermath to other sufferers…each persons experience is different, no 2 cases are the same. Your experience is just as important as anyone elses no matter what severity of HG you had. Even mild HG causes severe trauma! Do not think that someone with a more severe case of HG has it any harder than a mild case! People deal with different things in different ways, it is important to focus on your journey of recovery!
–Ignore or deny your feelings…you deserve to be heard and deserve support to get through this
– Assume your low mood/anxiety will go on its own…if you are suffering with mental health problems whether pregnant or postnatal, seek help as it may get worse if you do not treat it. Do not try and manage on your own
–Don’t assume other people have brilliant pregnancies…its ok to mourn the lack of a good pregnancy, but do not assume that other people have wonderful pregnancies. You never know what someone is going through and how they are coping with things.
– Lash out…its ok to feel bad, to be sad and angry but it is not ok to lash out at other people or yourself. It is no ones fault what you went through.
– Cope on your own!

 If you feel suicidal please reach out, nothing is so bad that you need to go down this road! Below are a list of useful numbers that you can call if you need to talk to someone!

National Suicide Helpline UK 0800 689 5652

Samaritans: 116 123
SMS: Text SHOUT to 85258

National Suicide Prevention Hotline tel:1-800-273-8255

I am always here if anyone would like some support or info of how to get support. Please send me an email to:
michellestevens1802@gmail.com or text/phone me on 07889453512

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.

Devastating Blow

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I ask the reader to have an open mind and be as non-judgemental as possible, with remembrance that we are not all the same and don’t all think and feel the same!

This week (September 7th 2021) I had an ultrasound relating to a minor gynae issue and discovered some potentially life changing and devastating news.

The doctor scanning me asked me about my symptoms whilst scanning. I hadn’t given much thought to my reproductive system as my gastric issues have been the forefront of my mind as well as poor Ollies health problems! But some of the symptoms were there, I just hadn’t connected the dots. The doctor said it was likely I was entering premature menopause, brought on by the trauma of the HG pregnancy or the continuing starvation my body is currently undergoing or a combination of the two. Either way I would need some more tests to confirm this, including blood tests. I’m still waiting to hear back from my consultant, I’m sure it will be a while before I know for certain, the wait is the worse thing!

So most people wont get this, but I’m gutted! Why would it bother me? My pregnancies are awful…you would assume I’m done! Yes the hyperemesis is awful, yes it nearly killed me twice. But I don’t feel done! Maybe its because I’m an angel mum and no amount of babies will compensate for the massive loss I’ve gone through? Maybe its because we have looked in to adoption and fostering and its looking so unlikely we will be suitable for either. Surrogacy is way out of our price range too. Maybe that its just that I’m having my options taken away. I don’t think I would ever choose to fall pregnant again but that doesn’t mean I’m ready to throw the towel in. It is not my choice.

Rightly or wrongly I always associated the menopause with the next stage of life, getting older. Its what happens when you are starting to reach your 50s and here I am only 33. Most of my school friends are just starting to have their children and here I am learning that, that’s it for me! What happens if a miracle HG drug comes in and we decided we wanted to go for another baby? I’m just not ready to take this next step in life. I sit here deeply saddened, its brought all sorts of thoughts and emotions and I suppose it feels like a grief.

Why cant I have normal pregnancies? Why cant my pregnancies be filled with happiness, not tubes and drips? Being as sick as I was during pregnancy made me feel ashamed, ashamed that I couldn’t just ‘get on with it’, ashamed that I wasn’t a beautiful glowing mum to be. I felt like I let me husband down. He couldn’t be the proud dad to be showing off his wife and her beautiful bump! I was always pale and sickly or had tubes in my face and arms. Why couldn’t I just be normal? Even after the birth I had to have the sickness continue..it just feels like I let him and myself down again!
“There’s always something wrong” I hear in peoples heads, they don’t even have to say it. There is a huge hidden shame within me.

Yes I’m so lucky I have 3 beautiful children, I should be so grateful and thankful that I have been blessed with them, some poor women don’t have this good fortune! Please believe me I am grateful and I feel sad for them and deeply sorry. And I also feel ashamed at my self pity! My older 2 children are biologically mine, I gave birth to them but that’s where the mothering stopped until Sarah was about 12 and Joshua was about 10. You see as a teenage mum I had a lot of help with Sarah and I fell pregnant with Joshua when Sarah was only just a year old due to falling pregnant whilst on the coil. HG reared its ugly head and I was so unwell that Sarah had to be looked after by my grandparents. After Joshua’s birth I developed symptoms of M.E as a result of the HG and was unable to look after my children as my illness progressed. I became house bound and a lot of the time bed bound, sleeping over 18 hours a day. So I missed out on so much, the story time at bedtime, the school plays, family trips out etc. I was always in bed, unable to do very much at all. During the day they were under the care of my grandparents and then when my husband finished work he would pick them up. I certainly wasn’t a proper mother to them. Missing out on being their mother for all those years is something I will never get over. It was having Ollie that improved my symptoms of M.E, during the pregnancy I went into remission from it. After his birth the M.E did return but not to such an extreme level. I have been able to cope as a mother to all 3 of the children and able to do so much more than I could before. But for example, I have  only experience of raising one toddler (Ollie) as by the time both my older children were his age they were being cared for by my grandparents. I have never experienced raising a small child before. In some ways it is like being a surrogate mother. I gave birth to my children but did not raise them. 

I was so incredibly lucky to have such a wonderful and caring grandparents who sacrificed everything to help look after my children. Without them, my children may have ended up in care or being fostered or Gavin would have had to give up work and we would be living entirely on the state. It was a hugely kind thing of them. They loved looking after my children, my grandmother still reminds me when I am sad and cry at the burden I imposed on them that actually looking after my children kept her and my grandad young, and that they loved it! I will never be able to repay the kindness they gave to me, I have nothing but gratitude toward them and shame at how I had to rely on my elderly grandparents as I was incapable to raising the two children I should have been responsible for. I will never ever get the years I missed back… but please try to see how being too unwell to raise my children may be why I do not feel like I have completely done with having children…I didn’t experience raising 3 children.

I have loved having the chance to be a proper mum, without having fallen pregnant with Ollie I would not have got this chance. I would go through HG for the rest of my life to have the joy of my children, I’d do anything for them.. But I cant help wonder what having a sibling more his age would be like? Someone for him to play with, the older 2 are already out and about and very independent, this will only increase over time. Ollie may at times feel like an only child. Don’t get me wrong there are benefits to this, more parental attention etc. 

As a mother to babies who have not survived pregnancy, I don’t think you ever truly get over the loss. There is always feelings of what ifs. Having another baby never replaces the one you lost, but you cant help wondering if filling your life with children will stop the constant gnawing at your heart of the ones you lost. You subconsciously try to soothe your soul in whatever way you can, but the reality is you can never make up for that ache. It doesn’t take much to bring up a reminder of the day you had to say goodbye. A familiar smell or if you hear a song that you heard that same day. For me it was the smell of popcorn, we had been at a bowling alley when I got that first stab of pain and I remember I could smell of popcorn (there had been a popcorn stand) and the smell along with the pain made me feel awful. Losing my angels may be a reason why I am unable to feel ‘done’ after having my 3 live children. But I know that even if I had 30 children and wonderful pregnancy experiences it will never make up for those I lost. I will never forget my little angels but I do recognise how blessed I am to have 3 healthy children.

It is so doubtful I’d choose to have another child but that doesn’t stop me wondering what if. It doesn’t stop me mourning the lack of a good pregnancy and feelings of joy when carrying a baby. And that doesn’t mean I’m ready for my fertility to be gone…

There is also the element of fear, I worry what the menopause will do to my body, how I’ll cope with it. I don’t feel ready for this huge next step. 
Forgive me if I seem selfish and ungrateful but I have so many thoughts and feelings in my head! Most of all I’m so angry! Angry that my HG pregnancy possibly caused this. Angry that the NHS has been so busy with covid that they have left me 15 months and more slowly starving, continuously suffering with sickness. How could they leave me to get so bad? Why has it taken so long to get the treatment my body so desperately needs. It really isn’t good enough. If something isn’t done soon, how long before other parts of my body become damaged for good?  

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.