The bowel that gave up hypermobility syndrome style! (Nice I know!)

Oh Lord, where do we begin this time? Grab a tea and a chocolate hobnob it's been a rough ride....

Trial to Frog pond

I went for the tests in Poole hospital last Monday, they were uncomfortable but essential so I closed my eyes and returned to frog pond (A beautiful 'pond' i.e mini lake in Canada behind our friend's house.) The place I so often visit in my mind when I am having nasty medical procedures done.

Frog Pond

The first tests lasted an hour and although he couldn't go into details about the results there and then he loosely indicated that it wasn't good. Although it does appear that whilst the nerves aren't perhaps what they should be in bowel they did respond at a higher frequency so it looks like this is indeed muscles rather then nerves. 

WARNING WHAT COMES NEXT IS GRAPHIC (but this blog is all about honesty and what it is like to live with these various conditions, Hypermobility Syndrome, Dysmotility syndrome, Ehlers Danlos type 3, Gastroparesis)

Regardless of the poor response from my bowel during the first test they decided to go ahead and do the proctogram. I'd never heard of a proctogram before and whilst I had a little idea of what was to come thanks to good old google I was still shocked at what it actually consisted of! I had been told to swallow a 'barium meal' two hours before and despite me telling them that my bowel is pretty much useless they filled me up with it, you know, 'down there'. I then had to sit on a commode (honestly I get to have all the fun!) and with a huge horse shoe x ray machine around me I was instructed to erm, pass it. Honestly my life is so glamorous!

Of course I couldn't pass it! Dur!  As they don't have a procedure for if it doesn't pass they sent me home! I didn't feel too bad to be honest at first but by about 9pm I felt horrendous I was violently violently sick and had an awful headache.

I don't remember anything of Tuesday, I was in agony and delirious. I slept all day (which is so unlike me, I always make the effort to get up and be 'normal mum' for the sake of Amelia-Rose, we drive to school then I take her, with someone pushing me to drop her off at the door and say goodbye) I was in and out of consciousness but just talked jibberish all day. 

Tony took Amelia-Rose to gymnastics after school and my mum came to sit with me. Mum apparently explained to me that she thought she needed to ring the doctor but that might mean I have to go back into hospital and in my 'out of it' state I hollered 'That's not fair'!

I had promised Amelia-Rose the day before that after gymnastics Daddy would take her out the front on her go kart, something that she had not forgotten so when they got home they did just that. The district nurse then arrived and my mum went out the front to take over from Tony so he could be with me. 

The district nurse did an enema (I told you I have all the fun) which of course did absolutely nothing so she called the doctor, it was then that Mum took Amelia-Rose back to her house for her tea. The doctor came and ordered an ambulance and said if I deteriorated then Tony was to call 999. My Dad then arrived to get my mums keys that she had left and to offer moral support whilst we waited for the ambulance.

After an hour the ambulance service rang to say that they were dealing with a high number of 999 calls but would be with us as soon as they could and again said if I got any worse we were to ring 999. Another 30 minutes past, every minute the contractions that I was experiencing increased. I drifted in and out of a very restless sleep completely unaware of what was going on around me and Tony decided enough was enough and rung 999.  

Is my friend!

The paramedics gave me all of my nightly meds from home but were unsure what else they could do for pain relief as I take such a cocktail of medication. 

I was taken to the local hospital (the one I was only discharged from a mere 5 weeks earlier after a 2 week stay) as i huffed and puffed on gas and air.

Like this but there was more!

In A&E I was x-rayed and of course my insides were absolutely glowing with all the barium, the x-ray technician said it was the most beautiful thing she had ever seen and wanted to take a copy home to hang on her wall! The problem was that the barium was literally set, so now not only was I full of 8 weeks worth of juice soup and forticips (the meal replacement shakes the dietician put me on and is the only 'food' I 'eat') I was now full of barium too.

I was admitted to the ward where I spent the next week. Thursday was a really hard day. I saw the consultant who told us that there was nothing long term they could do. I was to drink 2 litres of laxatives that would turn EVERYTHING (good and bad) in my bowel into water. I was in tears talking with them and asked if they would fit me with a ostomy bag (a form of colostomy bag) but he said because food doesn't pass through my system above my bowel effectively I would run such a chance of getting an infection that it was a call that they themselves couldn't make and they were referring me on to the 'world leading' specialist who thankfully is based in London.



I'm not going to lie. I broke a bit Thursday. I mean, I was crushed, in that way when your world just stops and you feel so lost and so much pain you actually go numb.  I can make a good life for myself despite all the joint dislocations and the joint pain. I know how to manage that. I can be the best version of myself despite all that. This gastro and bowel stuff though is literally stopping me in my tracks and the strain it is putting everyone I love under is horrendous. I see it in their eyes and in their faces and I can't bare it.  I feel the deep injustice people are feeling on my behalf and I see the sympathy in their expressions and for their sakes I just want to make it go away. Thursday was the day that I submitted and thought 'fine, let it be, you win' I couldn't even cry. I have never felt so alone in all my life. God it was awful.

Friday the doctors returned and I begged them to let me go home. So what I was still full of this poison and my bowel was at bursting point I just needed to be home with my little girl and my husband with my cat sat beside me. They'd already told me there was nothing they could do!



The doctor insisted I at least drink the laxatives and 'if' I felt like I could managed the journey home with the laxatives inside me then I was welcome to go. By the end of the 2nd litre my bowel should have been completely empty. So I drank and I drank then I drank some more and then it was gone. Hours went by and I felt like hell as I was warned I would and yet nothing shall we say departed?

I was asleep when the doctor came back. Tony told him I still 'hadn't been' but they said I was free to go anyway. Tony woke me and told me we could go home.

In the car on the way home oddly all I could think about was cereal. I hadn't 'eaten' (remember I live on forticips so in literal terms I hadn't drank my food) for 5 days and I wanted cereal!

Tony wanted to push me through the garden to the back door but I wanted to walk through the garden and one step at a time appreciate the beauty of 'home'. I opened the kitchen door and called 'Hello' and heard Amelia-Rose say 'Mumma?' to which I replied 'Hello' again came 'Mumma?' this time slightly more excited after a third call of hello Amelia-Rose shouted 'MUMMA' and came running into the kitchen and threw her arms around me. There are few things in this world more beautiful then the moment a daughter is reunited with her mother. That is a lot of love for a small place.

After we were all settled in I had my bowl of cereal and of course was awfully sick but I enjoyed the taste in my mouth whilst is lasted!

Before settling down Amelia-Rose read to me, she's read 48 books this year at school and is super excited to hit 50 books, we're going to have a big book celebration in honour of her achievement!

Then she snuggled down to sleep next to me and she held on so tight. Oh my goodness, this little girl's strength blows me away. Honestly, what a beautiful soul she is.

Fortunately shortly after getting home the seemingly impossible happened! The waters came!! I don't think everything has come away but at least hopefully the horrible barium is out. The doctor did warn that this was a very desperate last ditch attempt at getting me empty but it isn't by any means a long term solution however lets rejoice for now.

Kim and Aggie? Natalie and Michelle!

I had a day of visitors today and bless them two of my friends who came to visit sprung into action when I said I was struggling with the chaos in the house (by no means am I complaining that it hasn't been done I just was struggling because we don't normally have a messy house) and blitzed the place! Washing was put away, floors were hoovered, wet washing was put out to dry and the washing up was done! Amazing! When they asked if I wanted them to do it instinctually I wanted to say no but people always tell me how helpless they feel, they are so desperate to do something, anything to help us out and so I sucked down my pride and I said yes!

I am feeling more together, I've been listening more to the Rich Collins song 'Fall back' that I wrote about a few posts back. The more I hear 'She doesn't know if she's got the strength to climb another mountain' and it settles on my soul the more I think 'Lord I don't know where the strength will come from but i have to find it, this isn't it for me'.

I feel something stirring in my spirit and I have to believe that by stripping me back to nothing God has a plan for me, I wish I knew what is was but all in good time.

We are off to London on the 7.07am train for a really important appointment and then I have an appointment with my rheumatologist Wednesday and we'll come back on the train after that. I hate to have to leave Amelia-Rose again over night (she's off to mums) but hopefully, prayfully, finger crossed (ully?) this will be it for a while. At the very least until my operation at the end of May.

If you've read to the end, well done! Thank you for sticking with me! I'll try to mini blog on my phone from good old London town. Thank you to everyone who continues to support us through this quite frankly crappy time. We are eternally grateful to you all.

Blessed be x x x