Tag Archives: Delayed Gastric Emptying

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.