Final Diagnosis and Tube Referral

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.

Still Sick after Hyperemesis (part 2)

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)

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

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.