This was one procedure I was not looking forward to, I’ve had them before and I know from experience I don’t tolerate them. When we went to the Stanmore they had said they would rather my care was taken over elsewhere but we hadn’t heard anything, so do we just let this appointment slide and not find out what’s going on inside? Or get on with it and hope for the best?
As usual I had an awful night, I was really worried, I flung myself about and by the time the alarm was nearly due to go off I was grateful to get out of bed. My appointment was at 10:15 but because of the PoTs I wasn’t allowed to do the bowel preparation, it causes too many issues with drops in blood pressure. So the plan was to give me an enema once I was on the ward. So we needed to be at the hospital by 9:15 so they could prep me for the procedure.
We got the hospital and booked in at reception, however when I was taken through this time by the nurse he didn’t let Andrew in. This made me anxious straight away, as he checked my vitals I was explaining what he was seeing was not normal for me. It was extremely high, he just wouldn’t listen to me. We then started to discuss my health and when we got onto Ehlers-Danlos and Postural Tachycardia I could have cried. He had never heard of either I needed to explain to him twice what they were, how they affected me and the risks. I explained the problems EDS sufferers have with sedation and he just didn’t get it. I was in tears by this point. I could have happily gone home and forgotten all about this, was it not for the seven stone weight loss, the gripping pain in my abdomen and the aversion to food. I needed to be brave, he asked if I needed to speak with my husband and I said yes.
I returned to reception, it was much busier by then and I was obviously flushed in the face. Andrews face was one of concern, he asked what was going on and I quickly explained what had happened. He said he wanted to speak to the Dr too before the procedure or I would be going home end of !!
They took me to the ward and started getting me organized, I was in so much pain, I’d had no tablets as I was nil by mouth, so the Dr was called anyway. I asked for Andrew to be bought in. Andrew arrived and was obviously worried, I was in pain and not well, they weren’t listening to my concerns. In fact they had no understanding of what I was talking about. Then the doctor arrived and firstly he asked about my pain, I explained I usually take high levels of co-codamol but due to the procedure had been unable to. He agreed to me taking them, in an attempt to get me more comfortable. I then mentioned the Ehlers-Danlos and my concerns that during the previous endoscope procedure (gastroscope) I had not been sedated enough and just been held down, therefore I would like extra sedation. If this wasn’t possible I would rather not have the procedure. I explained that EDS patients do not tolerate sedation or anesthesia well, he kept nodding but I’m not sure he got it! Was I reassured, well I had been listened to, Andrew was holding my hand, so I felt I had to trust the Dr!
An hour later I was finally taken in, the cannula put in, and when I said again please don’t forget extra sedation, they almost laughed. I felt woozy but not sedated! They started the sigmoidoscopy and I’m sad to say they didn’t get very far, they hurt me so much I begged them to stop. It had failed, they gave me a little pethidine for pain, but not enough sedation.
They wheeled me back to the ward and I was wide awake, I can remember everything I saw the whole procedure on the screen. Why didn’t they listen?
So now what…. They have decided they probably need to do a full colonoscopy under a general anesthetic due to the level of pain. Funny that I told you I wouldn’t be able to tolerate the sedation.
I’m sick of being sick. I hate eating a meal knowing it’s going to hurt. I would love nothing more than to crave food, that hasn’t happened in over a year! I find social situations with food embarrassing and uncomfortable because I don’t do food or drink for that matter.
I’ve just called the hospital to find out when I can see my consultant to discuss getting the colonoscopy … His first appointment 22nd December, that’s before I even get put on a waiting list for the procedure. So for now as I sit here typing this I’m fed up, uncomfortable and wishing chronic illness would just naff off !!
I also turned to my fellow EDS sufferers for advice, what would they do, and they all said the same thing. Complain about what had happened, I had been treated badly, so I made contact with the hospital and put in a formal complaint. It may not get me anywhere but it might make me feel better knowing I fought for my corner!
Living With Ehlers-Danlos Syndrome Type 3 