Wednesday, 9 December 2015


As most of you probably know by now I have been in hospital over the past week. I am home now but still very sick but I wanted to fill you in on whats been going on.

I have a ACE (other terms for it is a appendicostomy or Malone Procedure. This is the definition
the surgical operation of opening the vermiform appendix to irrigate the large intestine.It is basically a procedure where they use the appendix to make a channel to the bowel for chronic constipation. I have had this for 3 years and have been incredibly happy with it and never had any issues with it... until this saturday.

So backtrack to Thursday I was due to have a clean out but I had come down with a stomach bug and I was told when I first got the ACE if that happened to not do a clean out until a day after the virus was finished. So Saturday I went to do my clean out and could not get the catheter in any more than where the plug stopped, it was bleeding and the liquid was spitting back out at me. Waiting out Saturday night and Sunday was so hard but on Monday we went to my GP Dr. Lomas (who I LOVE!) She and her nurse tried to get it open with cervical dilators (haha!) but it wouldn't go in and we didn't want to push it to much and end up in emergency surgery. She told us that she would call the stoma nurse and the colo-rectal and surgical team to try and get me in but she couldn't so Mum rang up and they told me to come straight into the ER and that the surgical team would be waiting. The hospital was an hr away so we jumped straight in the car and headed up there, we didn't pack a bag as we didn't think I would be admitted... how wrong we were. 

The surgeon attempted to open it while I was awake even though I didn't move he couldn't get it and he didn't want to push and perforate the bowel so he admitted me to get some images to know where to aim. When he did a Xray he said that he didn't want to attempt it and I would be spending the night at the hospital... the first inpatient stay since I transitioned to the adult hospital. I finally got into the room at 8:30pm. I was EXHAUSTED! I got a heparin shot (by the end of the stay my tummy looked like a pin cushion. I also got some IV nausea meds and pain meds.

In the ER

The next morning I woke up at 4am and couldn't fall back asleep. I had another heparin shot . The stoma nurse came to see me and told me that my ACE looked like it had been well taken care of and it wasn't my fault. The surgeons came round and ordered a contrast study and fistula gram and told me I would most likely be in that night as well. They tried to remove the blockage with wire but were unsuccessful and once again didn't want to perforate the bowel.  The contrast study didn't work because the liquid kept pouring out as the hole was closed (I knew that was going to happen). 

Thursday morning was rough. I was meant to go to Rocky Bay's Walk with Me event as an ambassador but I was too sick to go. I also got rough news from the doctors- They told me that it looked like the ACE was completely blocked- due to scar tissue from EDS and the weight I have gained from the steroids. They talked about giving me a stoma bag. 

Still a Zebra

On Friday I had surgery to do a manual evacuation and  try and reopen my ACE but as suspected it is completely blocked up. I have to make some tough decisions- and soon. I slept most of the day and had a fever on and off all day. 

Before Surgery

After Surgery

On Saturday I was planning to hold a scentsy party- I was really disappointed not to be out on time. I had to stay in to TRY and clean out my bowel as the manual evacuation didn't work. I got a NJ tube placed and got 3 litres of colonlitely through the NJ tube, 8 suppositories and a enema and still didn't go to the bathroom as much as they were hoping I would be. 

On Sunday the variety christmas party was on and I had promised i would take my nieces and nephew. They let me out for the day but I had to come back. I was so sick the whole time, I could barrely keep my eyes open. When I got back to the hospital my blood pressure had gone from 100 to 150! I was in my wheelchair the whole time and didn't do much but I still got so sick from it. When I got back they put some pico prep through my NJ tube to prepare me for a enema on Monday. 

On Monday I was taught how to use the NJ tube and was allowed home, on the conditions that I put colonlitely through the NJ and rested as much as possible.  I was told I am still very sick but until I make decisions they can't do a lot for me. Now I have to think about the future and my quality of life. EDS is cruel and hard and it always reminds me how life can change in an instance.

During my stay I missed my service dog Mary so much but I have been told that next time she can stay with me- as she picks up on my seizures before they happen

I want to thank everyone for their thoughts, prayers, cards and gifts- please remember a kind message means more than an expensive gift.. 

Flowers from Toni

Flowers from Rocky Bay and my Aunty and Uncle 

Beautiful Zebra from a friend it says:
"I'm sending you  hugs, smiles, sunshine,  rainbows and butterflies"

Flowers from my Aunty and Uncle

Please pray for me- and family and friends please remember that just because I am home it doesn't mean I am healthy.


  1. You a such an inspirational young women that are facing so much, its great to see your turning something negative into something positive by creating awareness about this issue. All power to you, great work!!!☺

  2. All of the best care for you Rachael's you are brave, I will share your blog no problem . ☺💛 I'm a subcriber of Eve & Artie 💕