Clinic

Yesterday afternoon I attended a transition clinic at Hosp A. The roads were nice and clear so we arrived in plenty of time. While me and mum were sitting in the car in the car park we phoned dad to see if he was on his way yet. Dad thought my appt was at 2.30pm rather than 2pm, so he said he'd meet us at the clinic as soon as he could. Me and mum went to check in at the clinic named on my appt letter, but the receptionist couldn't find my notes! As we sat and waited for them to find my notes, Dr W (consultant from Hosp A)'s name was wiped off the board which said which doctors were in which rooms! Dad joined us and after I'd been waiting for 20mins I let the receptionist know, she was still looking for my notes. After 40mins I was told that we were in the wrong clinic! So we headed to the correct clinic in another area of the hospital and were then 40mins late. My consultants had been wondering what had happened to us! Because of all this confusion I never saw a nurse so was never weighed and surprisingly I wasn't asked for it in clinic either! And another thing that was missed was an examination. Hmmm.

There were lots of people in the consulting room. Dr G (my consultant from Hosp B) was the only one there from Hosp B as my dietician hadnt been able to make it. From Hosp A there was Dr W (my consultant), C (my dietician), S (a small bowel tx co-ordinator), M (a clinical nurse), Hosp A's main small bowel tx surgeon and a nearly qualified consultant. Plus me, mum and dad. So it was quite a crowded room! Dr W led the clinic. At first he asked me briefly what my main concerns were to revisit later in more detail, I gave him my tablet list and he summarised my surgical history to the surgeon. I asked Dr W why it was so long since my last clinic (he said he'd see me again in 3 months, but it was 8 months) and he said that he can't keep track of time very well, so sometimes he doesn't notice when he's not seen patients for a while. So he doesn't keep track of that but there must have been an administrative error somewhere. That didn't fill me with confidence!

Dr W said to the surgeon that it had taken me quite a while to get off enteral feeds. It's funny how hosps see things differently - that seemed a long time to the team at Hosp A, but isn't really a long time to the team at Hosp B. I told Dr W and the dietician about what's been happening with my enteral feeds and eating. The diectician wanted to know what my high calorie puddings were called but I couldn't remember the name of them so she assumed that they were something different to what they actually are. Never mind. Dr W was surprised I was on such a small quantity of high calorie supplements, he didn't understand why they'd not been stopped completely. So I just told him that my dietician from Hosp B wasn't happy for me to stop them yet. I mentioned my lack of hunger and thirst and apparently I'm unusual in not feeling them. No-one seemed to know whether I'll ever feel hunger and thirst or not.

Then we talked about my ME. Dr W has seen similar symptoms in other patients post small bowel tx so thinks it's related to that. He said that he thinks that labelling it as ME isn't helpful because it means I don't look into symptoms further, I just put them down to ME. So at the next clinic I'll give him list of my ME symptoms to see what he thinks. I'm glad he's willing to look into them further. But I like having a name for my symptoms, knowing I'm not alone with it and being able to access support. I didn't like Dr W saying Chronic Fatigue related to my tx because it's more than just fatigue. And he said that often small bowel tx patients have trouble sleeping and unrefreshing sleep. He thinks if I was getting more sleep then all my other ME symptoms would disappear. I don't think so.

We talked about my tummy pains. Dr W thinks he knows why I'm getting them! I can't remember what he called it but it can occur when the colon hasn't been in use or hasn't been used like it would normally be for a period of time. Then you get pain from small levels of distention caused by eating food that normal colons would have no trouble with. Apparently slight inflammation from my last scope results means nothing. Dr W prescribed 2 new tablets for me to try! I can't remember the name of one of them, but it should ease the spasms. It's a bit like the Mebeverine that I tried before and it didn't work for me, but this one often works when Mebeverine doesn't. I can take it up to 3 times a day, but have to work work out what are the best times for me to take it. And the second tablet he suggested was Amitriptyline to make the nerves in my colon less sensitive. I've been on this before post tx for anxiety and sleep probs but wasn't on it for long. I remember though that it was very difficult to stop taking as I experienced a lot of withdrawal symptoms so am a little bit nervous about that. Because it makes people drowsy you take it before bed and so it might help my sleep too. If either of the tablets help then hopefully after a couple of months I'll be able to stop taking them and the pains wont come back. It was suggested that I try both at once. That seems an odd idea to me because if I see an improvement in my tummy pains I wont know which one is helping. I took the prescription into the surgery yesterday evening, so hopefully I'll be able to pick the tablets up tomorrow or Mon. Fingers crossed that they work.

My last blood results were all normal so my bloods can now go back to 3 monthly. Therefore I didn't need them doing yesterday. The kidney tests I had done at my MOT in Dec were all completely normal. Apparently I was never meant to get a letter about those results, like Liver Direct said I would. And I told Dr W about trouble with my periods so he's going to set me up another appt to see the gynaecologist there.

Then we got to talking about transition and my concerns about it. Apparently Hosp A can't take over my care gradually because then mistakes can be made if each hosp thinks the other hosp is doing something. So all my care will have to be transferred at once. Apparently Hosp B will never completely let me go though. Dr G even had the cheek to point out that each time he has to admit me he has to fill lots of paperwork because I'm older. I've only been admitted once since I turned 18 (for my annual tests last Dec) and even then I didn't stay on the ward. And the last time I admitted before that was 17 months previously for my illeostomy reversal. So I'm not admitted a lot! It took a while to get them to understand my concerns about transition as both my consultants seemed to think that I was worried about leaving paediatric services and didn't want to leave the team at Hosp B who I'm attached too. That's not the problem, the problem is that I don't want to leave Hosp B and then get to know all about how Hosp A works when I have an emergency admission, I'd prefer to know how it all works in advance. It was decided that my care will be completely transferred at the start of June and until then I'll get to know the team at Hosp A better and we'll work out how everything will work once I'm under their care rather than the care of Hosp B. Until the start of June my care will still be under Hosp B. I was given lots of contact numbers and email addresses for the team at Hosp A so I know who to contact if I have any problems. It still remains to be seen how easy they are to contact though. The Hosp A small bowel tx team is much smaller than the small bowel tx team at Hosp B, but then they do have a lot less patients. My dietician from Hosp A (who seems very nice) is going to contact my dietician from Hosp B. And when I email either of them over the next 3 months I have to send the email to the other one too. I was optimistic about the psych from Hosp B helping me with CBT to help my ME, but she hasn't replied to my emails since Nov so I've only had one session with her so far. And now I'm leaving Hosp B it doesn't look like I'm going to have a chance to do any more CBT with her, which is a shame. We were in clinic for ages and there was loads of information to take in so it was very overwhelming and tiring.

After clinic we decided to have a chat with S (one of the small bowel tx co-ordinators) to make a transition plan. Mum wanted a cup of tea so we held this chat in the cafe. I'd never met S before yesterday as she'd been off on maternity leave. The last few times I'd met the other small bowel tx co-ordinator, H, who I wasn't very keen on. I liked S though. We had a good chat about films rather than talking about what we were supposed to be talking about. Hehe. We spoke a bit more about transition and how we could make me more confident in it. We decided that I'd email S with details of how everything (bloods, scopes, contact etc) works at the moment with Hosp B and then she'll be able to let me know how it'll work with Hosp A and look at any problems we'll need to overcome.

For example the small bowel tx clinics at Hosp A are always held on Tues but because mum works on Tues I'd have great difficulty getting to Hosp A. So we'll have to see if Dr W would be able to fit me into his nutrition clinic on Weds instead. When I have my scopes though they'll be on a Tues so we'll need to work out how I'll be able to get there then. I was quite surprised to discover that the team at Hosp A (esp Dr W's partner Dr M) weren't keen on the idea of me having scopes annually. All but one of their post tx patients aren't as far post tx as me (most are less than 2 years post) and they have scopes 4 monthly. The fact that most of their post tx patients aren't as far post tx as me is a bit worrying because it's made me realise just how little experience they have compared to Hosp B who have patients 10 years post tx. So S thought I'd have to have them 4 or 6 monthly, which I'm not keen on at all because each time it would involve being starved for a few days and probably an overnight stay. And I'm a bit scared about not being able to have them under a GA any more. Going from annual scopes to more frequent scopes would feel like a step backwards for me. So we'll have to see what happens there. We need to work out how my bloods will be handled etc too. And I need to talk to my GP about my Tacrolimus because at the moment I get it delivered to me at home by a healthcare company. But once I'm under Hosp A my GP will have to prescribe and supply it.

So I'm going to try to get a nice lengthy email written to S this week and dad will help me think of things to include too. I received an email from S yesterday evening letting me know that because her email address isn't an nhs.net email address, but is instead an nhs.uk (not sure exactly what that means), I shouldn't email her too much confidential info about myself. So she's also given me her postal address at Hosp A. So now I'm not sure what I can include in emails and what I can't (sending stuff in the post isn't really a preferrable option as it takes so long and is much less convenient than emails), so I need to find that out. I'm now feeling a bit more confident about the transition but still quite nervous as June really isn't that far away. Hosp A also don't have nearly as much experience with small bowel txs as Hosp B which is a bit worrying.