Well we all know that this is where again my body throws yet another curve ball and wipes me out yet again.
I managed two weeks at work on the return from my holiday but on the second week I started developing pains in my side and back and down to my groin.
I just thought it was a small relapse and did the bed rest while Thomas was at school and I wasn’t working. Over the weekend the pain developed so much it was leaving me in tears and unable to move. I was suffering a lot of sickness and nausea, distended stomach, lack of stoma output, fluctuating temperatures and unable to empty my bladder properly.
On the Monday the 7th November I went to see my GP who examined and said my right kidney was very tender and was a positive urine dip test for an infection. He said he would send it away in case the antibiotics wont treat it..
“Yay Kidney infection.”
But the antibiotics didn’t agree and yes.. Reaction!!. Couldn’t see and was very faint. The doctor changed the antibiotics immediately and I took the course but did not help and the pains were getting worse. I rang the doctors and explained that it was worse and the tablets hadn’t helped. I got a call back that my GP wanted to see me straight away. I was checked, he was still certain that it was a Kidney Infection but due to how much of a mess I was in, he thought it best I got checked further, He rang the hospital and I was admitted to the surgical assessment unit.
Once there the doctors assessed and agreed Kidney infection. I had the usual tests and x-ray but it had come back that there was nothing in my urine or bloods to show a Kidney Infection or urine related. I struggled with the pain and was in tears as the waves of pain grew. Due to my EDS, P.O.T’s and Autonomic Neuropathy opiates make my condition worse and also slow/stop my Ileostomy working. However due to others failing they wanted to try a big dose of morphine to get in control, 30ml Oramorph and two 20ml Sub- Cut injection. These failed.
The following day I was told there was nothing on the x-ray and thought it was a relapse of my conditions. So just pain management…. If only! During the day I got pins and needles and shooting pains down my right leg. This was a random symptom to the others. I was seen by neurology and confirmed everything was ok and was unexplainable as to the symptoms. I was moved that evening down to the surgical wards I know oh so well. Over the weekend my bladder kept going into retention and after a few drainages we agreed that a permanent catheter one was a better option since my bladder wasn’t working as well as the pain waves in my leg growing.
On the Monday I was seen by my own surgical doctors, they examined and they thought it was my Kidney and arranged an ultrasound. While having the ultrasound the head specialist radiographer was asked to confirm what it had shown. He told me that there seemed to be a roughly 6mm wide blockage at the start of the tube to the bladder. He said that he was sending me straight for a CT to confirm what the ultrasound showed.
I was told that it showed there was nothing with my kidney but my bowel was fully impacted
Confused how id managed to fully compact my small bowel. So the push of large doses of laxatives was pushed through… well that’s what they hoped but I wasn’t keeping anything down so they returned the way they went in. The following day my consultant came and went through all my admission and said sorry for being messed around as the scan failed to show exactly what was wrong and said that he would send me for a dye CT. He said that will tell him everything and that he needed to know. I had the test and the following day, had said it was indeed my large bowel and colon that was fully loaded. He felt the line of large bowel back to front of where the pain was and stated you didn’t need to press hard to feel the bowel. He then explained what it meant.
He explained it was too dangerous to go home due to my illnesses and for current condition as my large bowel could perforate as I was a higher risk and wouldn’t be long. He explained if I went home I may not be able to get back and into theatre in time. Especially as it had caused nerve compression to the right leg, bladder retention, the levels of pain that aren’t controllable, temperatures, bad bacteria in stomach causing sickness.
He said it was a lot to take in but if I wanted to go home it was my choice. Of course I stayed… being told if I left there was a risk of death it was crazy to leave!
My surgeon then explained that it requires surgery and that he would also sort the issue of my stoma prolapsing four times too. He wanted to take the entire large bowel and close the rectum. But due to the EDS it could cause the muscles etc to collapse and damage to my bladder and cause fertility issues if I had it. So a Sub Total Colectomy would be my best option. I agreed with him. So I was put on the Emergency theatre list.
That night and the following night I vomited to a new level my own faeces where coming back up and required the NG tube to keep my throat and stomach protected.
After five days being on the list and while my mum was visiting, I felt a pop in my back and was in agony. I felt my back and my mum checked as I couldn’t even lie on it, I had to lay on my stomach. When she confirmed what I felt of a swelling that was growing on the right side of my back and too the side.
She informed the staff and they contacted my surgeon, within minuets the nurses came and said I was going straight to theater as I had perforated.
I woke in recovery 5 hours later apparently i should have come around from my surgery with my mum at my side. She explained they couldn’t wake me and when they stated they gave me a drug I am allergic to and it puts me into unconscious episodes. They gave me the needed injection to allow me to come around.
After an hour awake and constant monitoring I was allowed down to the ward. I had to keep oxygen on for a good few days due to having P.O.T’s as my levels were low. I had a good day with my friend Emma on the first day after my operation. I managed to have a caramel coffee and had three biscuits and it stayed down!!!! We thought it was the start of a fabulous year to come. I had another night and following day well until..
That night I had a lot of pain and was sick and struggled badly. They checked my Epidural and there was a full leak that required it to be stopped.
It was replaced with a Fentanyl pump. With the background and me able to press every five minuets it started to give me some relief to sleep for the rest of the night. The following day I was completely away with the fairies I wasn’t even aware of my mum at my bedside.
The following day due to the level of headache and sickness it was causing and that my stoma hadn’t worked I requested it was taken away. I was advised against but I felt so ill with it. For a week I was completely bed ridden and being turned and washed by the staff due to the pain and my conditions. We also struggled to get on top of the pain and I couldn’t get past the pain the drain in my side was causing. On the 8th day they needed a urine sample due to the amount of pain and that the catheter had to come out due to blockage. I was helped out of bed onto a commode to get the sample. This was my start to get my bum moving.. I spent a day using the commode but then when I caught the drain they swapped it to a smaller tube and in a bag.
So much discomfort was taken away just from that. It left me with being more mobile to use the toilet the following day and even have a shower. With progress and showing I was having small amounts of food and keeping it down, wound healing well, managing the stoma well and that it regained function and that the antibiotics had started helping the urine infection.
A month after being in hospital, many different options, being told I was in a life/death situation, surgery of large bowel and colon removed, bad section of prolapsed Ileostomy cut off and meshing put into help the stomach wall for strength and to help prevent a prolapse. Having my surgeon ask if I wanted to go home brought such a huge smile to my face as it meant I got to go home and surprise my little man. Whom I hadn’t seen in over two weeks due to how bad I was and that the tubes and wires scared him.
His face was so happy that his mummy was home.
So home… bed rest and what has happened within two weeks but Piter the notorious stoma for not doing as he is told has prolapsed and having a lot of issues with pain, sickness and bad contracting bowel. Five weeks post op and not as far into the recovery process that I should have been.
I await seeing my surgeon and specialist to find out the next step. But here is to fingers crossed once recovered from major surgery I have a better and healthier year ahead.
I had a lovely Christmas with my family, seeing close friends and being with my amazing son who again has been through another emotional ride. But this amazing little man of mine has been my strength and power to keep going and keep to the recovery instructions so we can get back to living!
Love you loads and thank you for being so amazing!