As August draws to a close were you aware it was Gastroparesis awareness month?


I wasn’t fully aware I even had this condition until the NJ tube was fitted, in fact we were pretty sure I was ok because after all the test came back all clear from the Royal London, we believed everything was fine.  Then a procedure that should have taken twenty minutes took over an hour an a quarter and four attempts.  In fact Mr Hussain was so persistent, the rest of the team wanted to give up but he refused until he got it into the jejunum.  When he came the next day to talk to me by my bed about my gut motility and what my next steps were his advice was to go back to Professor Aziz and have a gastric pacemaker fitted, that was how bad it was.  I was really shocked by this information.  I had come into hospital for a NJ tube and come out with a diagnosis of Gastroparesis and advice for a gastric pacemaker to ensure that it help my digestion.

So with all this in mind what is Gastroparesis?

It is a chronic condition in which the stomach cannot empty itself in the normally
It means food passes through the stomach more slowly than usual, leading to symptoms such as:
feeling full very quickly when eating
nausea (feeling sick) and vomiting
loss of appetite
weight loss
abdominal (tummy) pain or discomfort

You don’t have to have all of the symptoms, and they can come and go.

So what causes Gastroparesis?

Now obviously for me, it is part and parcel of Ehlers-Danlos but there are other issues and it all relates to the muscles and nerves which control the stomach muscles.  It could be caused because of a complication of surgery for weight loss, or it may be linked to Diabetes, Parkinsons Disease, scleroderma, amyloidosis or even the use of opiate pain relief.  So if you suspect you may have Gastroparesis you must speak to your GP and get tested straight away.

How is Gastroparesis tested?

1) a barium X-ray – you swallow a liquid containing the chemical barium, which shows up on X-ray and highlights its passage through your digestive system
2) a gastric emptying scan using scintigraphy – you eat food (often eggs) containing a very small amount of a radioactive substance that is detected on the scan; gastroparesis is diagnosed if more than 10% of the food is still in your stomach four hours after eating
3) a wireless capsule test – you swallow a small, electronic device that sends information about how fast it moves through your digestive tract to a recording device
4) endoscopy – a thin, flexible tube (endoscope) is passed down your throat and into your stomach to examine the stomach lining and rule out other possible causes

Hopefully the tests will have come back all clear and you can lead a normal life, however if the news isn’t so good, how do you go on, what now?  Well it isn’t curable to start with, it can be treated in various ways but it depends to what extent the disease has struck.

Diet – Suggestion is to eat smaller meals more regularly, rather than three meals a day, try six small meals a day, then you aren’t getting bloated or feeling full.  Also try liquid or softer foods they are much easier to digest therefore the stomach doesn’t have to work so hard.

Medication – There are various medications available but one has recently been withdrawn from use, due to my recent diagnosis I am not aware of the current which are available at this time.

Electrical Stimulation – Gastric Pacemaker, a small implant placed inside the stomach to provide electrical pulse to stimulate the stomach into keep working.

Botox – For severe cases the valve between the stomach and the intestine is injected with botox to relax it, to keep it open for longer so food can pass through.

Feeding Tubes – Various types, once weight drops to a serious level of malnutrition then enteral feeding needs to be taken over.

I think most of all I needed to be fully aware of my Gastroparesis diagnosis and i wasn’t.  I didn’t know what it was and know I have read more about it and understand the condition a little better I hope to get to grips on how to handle my illness.

Tummy Pain

As I mentioned in Thursday’s post I had developed this nasty pain in my abdomen a few days ago, every time I fed it just hurt the same as when I would eat solid food, the deep seated ache and this is partially digested liquid that is being sent straight to the jejunum, so why was it so painful? I stuck it out for a couple of days but on day two I decided that this probably wasn’t normal so would go and get myself checked out, maybe the tube had moved a little?

Again I was lucky, I logged on and there was an appointment with one of the registrar GP’s that afternoon, I booked it and off we trotted.  I didn’t care it wasn’t my usual GP I just wanted to see someone to check this thing and make a decision, hospital yes or no?

I explained why I had made the decision to go along and he said he would give me a once over, blood pressure, temperature, pulse, I then got up on the bed and he had a good feel of my tummy it was so tender and sore and he then listened intently to whatever was going on in there.  He felt that at the moment I was alright, for me, however if I stopped being able to hydrate myself then he said I wasn’t to hang around, that was the time to head to A&E.  He didn’t think the tube had moved anywhere as he could hear the movement of liquid in the jejunum as my feed loaded, so that was good, no X-ray needed today, I could just go home and rest.  His main concern was that I might have something called “Refeeding Syndrome”  so he wanted to do some blood tests to keep an eye on that.  I was impressed as nobody had even mentioned that, so for him to even consider that was good.

He did ask me what the long term plan was, as he did say I obviously didn’t want the tube hanging out of my nose for long, I answered him honestly and told him I had no idea what the long term plans were was they hadn’t been discussed.  I explained that we had been offered at PEG/J by the bedside just before the NJ was inserted, which in hindsight maybe we should have gone with, but we didn’t know what the planned weight gain was, the length of time for the tube was, we sort of felt left in the dark and it was a bit frustrating.  He suggested speaking to the dietician in the first instance and then maybe getting an appointment with the GI team to get a better idea of the plan, just for reassurance.

In the meantime though he wanted me to just head to A&E if I went downhill in anyway, temperature, unable to get fluids into me or any other changes.  Overall it was a good appointment and very reassuring but it didn’t solve the pain in my abdomen which was worse by the time I had been poked and prodded, so I got home and went and laid down feeling very sorry for myself.  I was really hating this tube more and more each day.

Shoulder Physio

After weeks of waiting it was finally the day of my appointment, I was looking forward to it as in some hopeful way I expected to come out with a magically working arm, how wrong I was!  The brilliant thing about this amazing service that my GP now provides, is that it is all done at the surgery.  No traipsing off to another hospital or clinic, we just needed to nip round the corner from home, which was great because it was the day the heavens opened.

We were greeted by the lovely phsyio, who was very forthright, she immediately said to Andrew “and who are you”  I hadn’t even had a chance to explain who he was and why he had been bought along.  However, he explained himself and we just got on, she asked me to tell her why I was there and I told her about the fateful night at Wheelchair Basketball.  She then obviously asked the pre-existing medical conditions and my EDS comes first and foremost in my mind now, its my primary condition, now with my NJ hanging out of my nose that sort of takes over conversation too.  This physio was a bit special though, she knew all about Ehlers-Danlos, she was asking me about my Beighton score, I told her I was a 7/9 explaining my knees are the only part that do not hyperextend.  She then told me her history she worked previously at Great Ormond Street with EDS children, so she had a good and thorough knowledge.  I instantly felt safe in her hands, I knew she wasn’t going to overstretch my limbs and damage me.   She even mentioned that she was hyper mobile herself, this reassured me further, I liked this lady a lot!

She asked me to remove my jacket alone, so she could see how I could move and when she saw how I kept my elbow bent, she asked why?  I explain that if I kept it like that it stopped the severest pain and the risk that it would go into a spasm, she kept typing notes all the time.  We told her about our trips to A&E and the diagnosis’ of Rotator Cuff damage and then Tendonitis of the Rotator Cuff, with all this being two months ago I just explained all I hoped for was to use my arm again.  Not being able to propel the wheelchair was a pain, I was no longer able to put my hair into a ponytail or straighten it anymore, those were now jobs for Andrew and that was were I got quite teary.  More and more of my independence was being lost and I hated it, this time due to a stupid injury.  She rolled up my sleeves and took a look at my shoulders, comparing them to each other, I explained that since I had experienced a sublaxation months previously I had noticed that my left shoulder now sat differently to my right.  We told her about our trip to the hospital, that Dr Mason had seen the shoulder and said it was out of socket, that when we got to the hospital the Doctor there immediately said it was out of socket but the X-ray had shown nothing.  That they had put me in a sling and that six hours later when removing the sling, there had been an almighty crack and low and behold my shoulder had relocated itself, quite painfully.  However it never seemed to sit correctly in the joint, it was now very square when looking at it from the front.

All the time she continued to examine me, then she asked me to try and move my arms together to show range of movement, now my right arm I can still be completely hyper mobile with, however my poor left arm, as soon as I moved it I wanted to yelp, she could see the pain in my face and told me to stop.  She then excused herself and we waited five minutes for her to return.  She came back with the surgery’s Orthopaedic specialist GP and his current junior, they asked if they could check out my shoulder and of course I was willing to let them have a look.  If they could let me know what was wrong I would let the world and his wife have a go.  He had a good old grapple of my arm and shoulder and yes he did hurt me but they came back with a diagnosis.

I have ADHESIVE CAPULITIS, more commonly know as frozen shoulder.  This has been done post traumatically from the injury and the prognosis isn’t great which left me reeling slightly.  Sadly it can last up to three years, there are three stages to it

  1. The Freezing Stage – where it becomes increasingly worse, normally symptoms are noticed more at night.  This stage last anywhere between 2 – 9 months
  2. The Frozen Stage – the pain doesn’t get any worse, however muscle tone will decrease due to lack of use of the arm.  This stage will last between 4-12 months
  3. The Thawing Stage – Gradually movement will reappear and pain will decrease (yay !!)  This stage can last from five months to many years 😦

So with that news she asked me to try and move the arm as much as I could, just little pendulum movements in my wheelchair to keep the circulations going, try and keep active in the lower limb to stop the wasting of the muscle tone and she has offered me some acupuncture for pain relief, which I have said I will do because not being on opiates is hard work and I am willing to try anything.

So I left the surgery quite deflated I had hoped to have a fixed arm and shoulder instead I have a diagnosis that might mean I won’t have it working for months or years, trust me !!

Amazing Zebra’s

Linking up with fellow Zebra’s online is very common, I got chatting to Sonali about a year ago via Twitter, then after a while we felt we knew each other enough to add one another to Facebook.  One day I noticed her status saying she was off to London to a hospital appointment, so were we, so I sent a message asking which hospital?  Yes she was heading to the Royal London and I was sitting in the waiting room, I was really excited, finally we would get to meet.  About ten minutes after our first message, there she was booking in and I have to say thank god for late running clinics because that day we had so much to chat about.  Even Andrew sat there chatting to Sonali and her mum about appointments, hospital care and EDS, it was just a kinship.  In fact by the time I was called through there was a group of four of us, it was great, a real zebra family.

So why am I telling you about Sonali, because she is amazing (or ever so slightly mad)  on Sunday she is abseiling down the Orbit at the Olympic Park in aid of Ehlers-Danlos UK.  Despite all her pain levels, risks of dislocations and her feeding PEJ she’s going to chuck herself off a perfectly good structure and dangle by a rope?!?  Mad, brave but totally bonkers and I love her for that !!
So I’m asking you to dig deep, here is a link to her Just Giving page –>>  Please Donate 🙂  I wish her every success and will post some pictures next week of her in action (keep an eye on my Facebook page), as she plans on sending me them.

Good luck Sonali your Zebra Sisters will all be with you in spirit 💗 Xx

One Week of NJ Feeds

A week of NJ Feeding has been survived, I haven’t ripped it out of my nose, despite wanting to on numerous occasions.

At the moment I have only achieved the night feeds as the back pack arrived yesterday, so I am thinking of skipping a feed this evening and going onto a day feed the next day, I will report back.  After the first couple of feeds which Andrew had to carefully do all the handling for me, I can now manage it myself, it isn’t difficult, it is just a “bind”, being trapped to a machine for that length of time is personally a bit of a nightmare.  For example, Saturday night Andrew wasn’t working so he wanted to do something,  I suggested the cinema we looked at the timings but nothing could fit in with the schedule of when my feeding machine needed to be started, so we just gave up looking and stayed in.  This is where my worries lay, could cracks form in the relationship because suddenly we are tied to the house or a schedule because of a machine/me.  It just gets a bit frustrating and this is only one week in.

Second issue the noisy pump, after a few days we went to see my OT and I had my little meltdown about how I felt it was already impacting my relationship.  We were sleeping in separate beds due to the noisy machine, so that night Andrew insisted I try and sleep in our room, he is tolerating it as best he can but I am giving him broken night, very broken nights.  I know he won’t chuck me back into the spare room because of the state I was in during the OT appointment but is it fair to cause him such a bad nights sleep, when he had such a full on day at work?  Cue daytime feeding ….  I seriously think this will be our answer, yes it will be 10/12 hours attached to the machine, but with my little bag on my back I can go anywhere with it, physio appointments, shops, you get the idea.

Sleeping position, over the weekend I had to stop sleeping at such a sharp angle as I gave myself a really sore neck, so bad that it triggered my headache back to a 10/10.  That has taken nearly three days to settle, so I have started laying flat again, this isn’t good for the feeds but it is better for the sleep.  Again the daytime feeding might solve this issue.

Finally I have developed a really nasty pain in my abdomen, I have no idea what it is but I get the feeling a Doctor is going to want to see me very soon, its always the way.

Weigh in this week was a positive one, when I went in to Wexham to have the tube fitted I was 47kgs, yesterday i weighed myself and I was 48kgs.  It would seem that I have gained a whole kilo already in a week, that is a positive which I need to take from all this negative that I am feeling.

Here is to juggling the feeds next week and finding a solution to making it work for us.


Towards the end of last week my emotional state was in a bad way, sadly I can recognize it all too well.  The permanent tearful state, not wanting to be left alone, yet always being left on my own, I hate it!!  On Friday there was a plan for me to leave the house for a bit, if I felt “up to it”.  I had been convincing myself all day that I could do this so, when, somehow lost in communication all the plans changed, I shrugged my shoulders and just accepted another night in alone.  I had lost my fight inside me and after all I was now feeling like the Elephant Man with this thing on my face, people wouldn’t want to see me like this!  On top of this I had abdominal pain, so maybe I should be taking it easy?

As Andrew went out, I struggled with the isolation that night but counted down the hours until his return, he wouldn’t be too long?  Would he?  When he came home in the early hours, I don’t know if I was angry or relieved.  Relief that my carer was finally home or angry because I wanted a night off from all this crap, the pain, the machine, the wheelchair, the EDS!!  The upset and stress had ramped up the pain levels, so I had been curled in a ball for the last two hours waiting for him to return.  I finally felt broken, I don’t know what broke me, the isolation, being let down or just the illness but something just broke!

The next day somebody suggested I was selfish for getting upset when Andrew went out, maybe I am but I would love a night off from all this bullshit.  To that person and anybody who critiques me for getting upset for being left alone, maybe you would like to come and sit with me for those few hours I would love some company?  Well it’s not like anyone comes to sit with me ever!!

In fact visitor count to this house since hospital discharge is four people, yes, the number of people who have come specifically to see ME is four people.  I’ve been out of hospital ten days, including two weekends, now I know people have busy lives and some live miles and miles away but I thought people cared!  How wrong I was, even Andrew and I had this discussion yesterday about the pressure it puts on him having to be about 100% of the time.

So do I feel isolated and depressed, yes, I also feel sadness but what can I do about it? I don’t know yet.  I need to speak to my psychologist and get to the bottom of these feelings.  Hopefully I can keep the black cloud at bay for the time being, I do not want that spiraling out of control again because last time they gave me some nasty pills for that and those are the ones I want to avoid !!

Another OT appointment

Was there any reason in going all the way to the Stanmore?  I hadn’t done any of the “homework” due to being a hospital inpatient since my last meeting.  I called the outpatients appointment line to discuss what I should do, however I got cut off, then when I called back it just rang and rang.  To call back the next day would mean a less than 24 hour cancellation and that’s just not acceptable, so I felt I should go along and see the OT.

In the end it was a good decision, we arrived and my OT, Hasia is pretty switched on.  She instantly could tell things weren’t good and the first thirty minutes were taken up with helping me get my emotions in control.  It was a good thing I had been bottling things up and I just let it all out.  I explained how I felt about the tube, it wasn’t just the physical feel of it either, the emotional feelings, I couldn’t stop the tears, the pump was noisy so I was now sleeping in the spare room therefore it was impacting my relationship.  I felt the NJ tube was more than just a tiny little feeding line, it had these far reaching implications and nobody and explained them to me.  Nobody had counselled me, or explained how I might struggle, they just felt I would be ok with it and fitted it.  What was even worse they had tried to get me have a PEJ which I think I would have completely had a full meltdown about.  Hasia and Andrew sat and listened as I sobbed out, all my frustrations and upset, then once I calmed down a little, they started to speak.

First there was a plan Andrew was to contact the dietician, he was to sort out all the issues I was having.  It was obvious that the stress this was causing was impacting both of us hugely, he agreed immediately.  Next she suggested that we ask if there was any available counselling in relation to the NJ from the dietician service, however in the meantime she would speak to my psychologist about seeing me.

We then moved on to how to lift my mood and get me back to the positive minded person she had met previously, she felt that it wouldn’t be too hard to do, it was just a case of setting some time aside for relaxing and consentrating on myself for a short while and thinking of positives, rather than focusing solely on the negatives in my life.  By the time we left the tears had stopped and not only did we have a written plan of action, we had some print outs for relaxation apps and “how to tools”

 She asked to see me in a few weeks, which would give me time to action the plan and by then it would also have given the NJ tube a make or break decision time.  As we left I felt that Hasia had gone above and beyond her job description that day, she had really supported me, so I let the hospital know with some positive feedback.

I asked Andrew to get me a big notebook that day and from the next morning I started keeping a food and activity diary, so I would be able to track the positives about how much I can complete on a day to day basis.  My mood won’t lift overnight I just need to try and focus on what I do and how I do it, that’s part of my “pacing”  Wow Hasia would be so proud of me.

My next appointment is at the end of September, so I will have my diaries up to date and completed for her, so she is pleased with my achievements.

Dietician’s Day

After my amazing three hour appointment with the Abbott’s nurse I wasn’t sure what to expect with the dietician.  Andrew intended on popping home to go through the planned feeding regime, to be sure that everything was perfect for our first night.

I was really surprised when she was at the door twenty minutes early, so text Andrew quickly, however, he was tied up at work and wouldn’t be able to get out. Oh well, I would relay any important information from Emma to him. We ran through the feeds I had in the house, which I had been sent home from hospital with, and she agreed they would be fine to start. The levels I was starting on were low, she discussed how they would need to be increased over the coming weeks.  So at the moment my feed intake were 400mls at 40mls per hour, slowly we would work this up until I could manage the whole litre bottle.

I explained I had run out of syringes already, so they would needed to be ordered urgently.  So we spoke about an order for feeds, feeding sets, syringes and I wanted a back pack, as I felt I should give day feeding a go.  I was struggling with night feeding as it is not that easy, the noisy machine, being propped up at a 45 degree angle, waking feeling clogged up its just not ideal, so to feed during the day when you are always upright might suit me better?

I then asked about her about who would track my progress, I assumed that this would be very carefully tracked by the medical teams, how wrong I was.  She asked that I weigh myself and let her know on a weekly basis, ok yes I can do this, but this didn’t seem the hands on care that I was expecting.  In fact our whole meeting that morning had been rushed, so far she had been in the house less than ten minutes.

I did explain I was struggling emotionally with the NJ tube and that in the long term the PEJ might be the way forward and she stated that it would be anyway, as the NJ has a life expectancy of only about six weeks, at  that point I felt really brushed off.  Our appointment was bought to an end and she left, how different the two meetings could have been, compared to that of the Abbott’s Nurse.

I messaged Andrew to tell him that it was all done and I think he was just as shocked as I was,  how could the appointment be finished?  I tried not to get upset or stressed out but everything seemed to trigger tears, every day!  There I was sitting in my front room sobbing at why was I going through this?

The next day I picked up an answer phone message from Abbotts, the dietician had placed my first order and it would be with me at some point on the Wednesday, this was a major problem as I had a hospital appointment.  I called them back straight away to let them know and immediately we ran into problems, firstly the dietician had only ordered syringes and feeds, no feeding sets or the back pack.  So sadly after the that night I wouldn’t be able to continue feeding as I had no more feeding sets, this is the piece that attachs to the bottle and the pump.  Abbott’s couldn’t amend the order, they needed to hear from the dietician, so I called her, however despite leaving a voicemail after nearly 24 hours I still hadn’t heard from her.  I was getting more and more upset and at that point Andrew stepped in, he felt this was getting too much for me.

He called the dietician’s office and explained that in my first week he had just expected a full kit to be set up and ready at our home, it hadn’t and with my stress and  emotional  levels through the roof and me considering having the NJ removed, this wasn’t good enough care.  He told the person on the end of the line what was missing and amazingly I had an emergency delivery within a couple of hours, the plan is that early next week the rest of the items will arrive.

I think we then need to address my care, I am feeling less than supported, I am struggling with the tube, I don’t know why I thought I was prepared, when I met the team a month ago I was buoyant and excited with the team.  Now I am scared and tearful every day, this is not how I should be living my life, so on Monday I will be speaking to the dietician and talking about how to improve my care.