Firstly, I'd like to take this opportunity to thank everyone who was supportive of my awareness attempts during ME Awareness Week, I'd also like to thank everyone else who did things to raise awareness and/or funds, and those who supported them- I couldn't be more grateful to you all! I hope you all enjoyed yourselves and aren't suffering too much for it! I was hoping to get another post or two out during awareness week, but it wasn't to be I'm afraid. Other people have done a fantastic job though so please do have a look around online and dig them out! The 3 lovely ladies featured in my 'favourite blogs' box on the right all wrote fantastic pieces for awareness so please do take a look.
I've had 2 appointments recently, so thought I'd share how they both went now things are a bit quieter.
This was GI appointment number 2, but with a new surgeon, this time discussing the whole gastro-intenstinal system rather than just stomach-up!
A while after checking in, I got called over for all the usual pre-clinic checks including blood pressure, heart rate and oxygen saturation- all fine. I was then weighed and measured- my BMI has improved- it's up 1.2 compared to at my lowest which is great. I then went back to the waiting room before being called through again, but this time it was to see the doctor. I was left in a room on my own waiting for the consultant- both GI clinics I've been to have done this and I find it very strange, particularly given the amount of medical equipment in there!
The consultant eventually came in. He was friendly and pleasant. He asked about my course and my circumstances, so I explained I was on medical leave etc.
He asked about my weight, and I explained that it was increasing rather than decreasing and was much better than it had been. He seemed satisfied that it was therefore not a huge cause for concern.
We had a long chat about all my abdominal symptoms. I explained what had led to me being referred to him, and the investigations I've had done already. Basically, I had been advised by my upper GI surgeon to be referred again to have a colonoscopy if the results of the investigations he was ordering came back clear, and they did.
The (new) GI surgeon asked me what I thought would be found on a colonoscopy. I replied 'nothing'. We both agreed that my symptoms point markedly towards IBS. Also, were it an IBD, inflammatory markers in my blood would be raised and I know they aren't. He felt an IBD was unlikely and I don't fall into the age bracket where bowel cancer is a major concern.
He said a colonoscopy would be very unpleasant for me to go through because of my IBS, the prep is not easy, and it's not 100% safe. It is a safe and bearable procedure, don't get me wrong, but like all things there are risks. He said he'd hate to refer me and it cause complications, as I have enough to deal with as it is and he is confident it would come back clear so it wouldn't achieve anything. He asked me whether I was particularly keen to have it done, and I was perfectly happy not to go ahead given our discussions (and let's face it, who wants to go through a test like that!).
I was interested when he commented that Irritable Bowel Syndrome is not considered a diagnosis of exclusion- you don't diagnose it when other conditions aren't found; it's considered a clinical diagnosis that can be made based on symptom history alone. I realised IBS was often diagnosed and treated by GPs without invasive investigations being necessary, but I had never thought of it like this.
I then brought up the topic of gastroparesis (partial paralysis of the stomach) and whether that was an avenue worth exploring. He said it would certainly explain some of my symptoms, particularly my nausea, and it was perfectly possible that I might have delayed gastric emptying. He then went on to say, however, that there was only very basic equipment nearby, which would only enable a very basic gastric emptying study to be done and it would be best done further afield, maybe near Uni-home instead. He did say that it's questionable whether knowing I definitely had delayed gastric emptying would have an impact on my treatment anyway though, because there's little that can be done about it. So, I think that's something to think about, because there's no point having tests done for the sake of it, and I have tried drugs to increase gastric motility (and therefore speed up stomach emptying) in the past with no real success (although I think I had to stop them due to side effects), but an explanation could help with understanding and coming to terms with my symptoms... We'll see.
At one point he asked about CFS; whether it was different to ME, what I understood/had been told about my illness, and whether my GI problems were common with the condition. They're the sort of questions that are incredibly difficult to answer eloquently and fully when put on the spot with limited time, and few definitive answers available, but I hope I helped him understand a little, or at least sparked a bit of an interest and he may have gone away and looked into it a bit more. He seemed to be showing a genuine interest, which was nice!
I have obviously only outlined a lot of what we discussed, but there are details I'd rather keep private, for obvious reasons.
He said at the end that it had been interesting to meet me and he had learnt a lot. I think we both felt that although the appointment hadn't really achieved a lot in terms of arranging any further investigations or anything, it had been helpful in terms of discussing what the problem was, what it was unlikely to be and whether further investigations were therefore necessary. It was like an interesting, engaging chat about something I knew quite a bit about, but was keen to learn more, with a few slightly awkward moments discussing topics nobody likes to discuss!
It would seem that I now officially have IBS. It's not come as a huge surprise because I've had 'suspected IBS' for years and have been on medication for it for probably over a year now, but that's chronic illness diagnosis number 4 on the list I think. Asthma, Atypical facial pain, Chronic Fatigue Syndrome and now Irritable Bowel Syndrome.. Fun! AFP and IBS are both because of my CFS, and even my asthma has been worsened by it! Chronic illnesses certainly seem to breed.
I got lost on the way the clinic (because it's a hospital where I always get lost, it's tradition), but had factored in time so still arrived early!
I was given questionnaires to fill in about different symptoms and limitations- some obviously relevant to dizziness, others slightly more abstract. I managed to work my way through the questions before my appointment time, although it was quite a task!
I then got called in by a nurse and had an ECG, and then I was fixed up to a different machine (with different electrodes typically!), a blood pressure monitor and something round my fingers. They took all the measurements lying down (the finger-thing makes it feel like your finger is throbbing) and then I was stood up for a couple of minutes while they took the measurements again (standing=ouch!). Being wired up to quite so much equipment and having to have so many electrodes stuck all over my chest felt a bit strange, but the nurses were lovely, and I was made to feel at ease throughout.
I was then taken round to the consultant. She was friendly and asked me questions about who I'd been referred by and why. She asked me about my CFS diagnosis, my dizziness and fainting, meds etc.
She explained that some CFS sufferers have problems with their autonomic nervous systems- normally POTS or Neurally Mediated Hypotension. She said that because my blood pressure is fairly low, she suspects I may have NMH. She said it's important to know because if I have NMH, there are medications that can treat it. The basic testing, however, had not given enough evidence to make a diagnosis. She said that she felt further testing was needed, so I'm going to have a Tilt Table Test. She said it would involve me standing for up to 40 minutes, but I would be supported, and they would put extra straps round my legs to take the physical stress off my legs. She asked whether the idea filled me with horror and I said it wouldn't be pleasant but I was happy to go ahead. She is therefore referring me across to the hospital where she will do the test.
I was advised to increase my fluid intake in the hope that that might help, as increasing fluids and salt can help to increase blood pressure and is often a management strategy with dysautonomias.
I'm hopeful the tilt test will show a treatable abnormality- it gives me hope that something can be done to improve things. It's weird when you're chronically ill like this, because you're already sick so you're just looking for ways in which things can be helped/treated, and diagnosis of specific problems is sometimes a way to get treatment, so it almost seems like a positive thing.