Gastrointestinal woes

 So for the last few months I have not been able to eat solid food and have been relying on Fortisip drinks to get the majority of the my calorie intake.  People who know me know that I have been trying to lose weight but this isn't a healthy way to do it.  Every time I eat solids I either throw it up or get really bad tachycardia, excessive sweating, stomach pain, nausea and other unpleasant symptoms.  The amount of apathy I have come across from medical professionals has been staggering, because I am still overweight they aren't overly concerned about the fact that I'm losing weight so rapidly and can't eat. I'm overweight still so therefore it really can't be all that bad!

In the time that my stomach issues have been playing up I have lost nearly 3 stone. Usually these flare ups only last a month or so but this has been going on a lot longer than usual which is worrying me. My GP originally tried to refer me to the neurogastroenterologist (what a mouthful that is!) at the Royal London Hospital but they are currently not taking referrals and I had been discharged from their care a couple of years ago.  Although I hadn't found them to be all that helpful before anyway, yes they got me on meds but their attitude was if I had another flare up that I should "manage it realistically", I'm not entirely sure what they meant by that.  Either way none of my previous flare ups had been this bad or for this long.

The second referral went to the wrong person, I ended up seeing an upper gastroenterologist at Southmead hospital who specialises in bariatric surgery, not really what I needed! There wasn't really much she could do for me so she recommended that I see a gastroenterologist. It went wrong somewhere in the choose and book system because the request was actually for the gastroenterology department but somehow that got changed to upper gastro surgery department instead.  It obviously was a waste of my time, energy and the upper gastro surgeon's as well.

So I then had to go back to my GP this time referring me to another local gastroenterologist who I found out specialises in Chrohns disease, again not really what I needed.  At least she ordered some tests that were relevant.  The Chrohns specialist gastroenterologist referred me on for a barium swallow which was rather disgusting and I haven't had the results from that so I'm not too sure the outcome of that yet. For those who don't know about the barium swallow you have to swallow this chalky sweet substance and they take pictures in the xray to see if things are getting stuck in the esophagus. I had been having swallowing problems for a while and my pills had been sticking around in my throat for hours.  So hopefully it showed something, although knowing my luck it will all come back clear.  Her usual course of treatment for what is highly suspected to be gastroparesis I am already on the maximum of all the medication that she would usually have prescribed, that doesn't bode well when your stomach is too full to complete an endoscopy 16hrs after last eating, whilst on the maximum dosage of the medication that is supposed to help.  I was told that my next options are tube feeding of some description which obviously is a last resort option.  She said she was happy for me to be referred on to a specialist in London who may be in the position to help me more than her.  She gave me a slip of paper to go to reception for an appointment in 6 months time but admitted that there weren't any appointments available in the next 6 months! So what I was supposed to do with my weight dropping like crazy for the next 6 months I'm not sure.

I had been in touch with a few friends on Facebook who recommended that I see the gastroenterologist at UCHL as they had seen her and said that she was good.  I phoned this specialist and was told that the waiting list was only 2 months and that they could get me in sooner if it was urgent.  I thought great! So I took the name, phone number and other vital details to my GP and their response was incredibly underwhelming.  They were very reluctant to refer on to the specialist in London because I was under the care of the local "specialist".  They had to really make sure that this was the right person this time because of the three previous failed referrals.  I had to do a lot of hand holding and persuading to finally get them to do the referral to UCHL.  It was only when I mentioned that I had ran in to Dr Cohen (Pain Specialist and Rheumatologist from RNOH Stanmore) at the HMSA conference, that Dr Cohen said that I would lose my place on my rehab course that I'm supposed to be going to at the end of August if I couldn't get my calories up that she finally yielded and sorted the referral.

I am now waiting to hear back from UCHL.  I explained the importance of getting this sorted ASAP as I'm losing a lot of weight and the above rehab course reason.  It has gone to the consultant but hasn't been input into the computer system yet so the secretary couldn't update me with what is happening.  The consultant was on leave last week and is now working through the backlog so I'm really hoping to hear from them in the near future.  This would have been pretty stressful for anybody but having the extra anxiety that being on the autistic spectrum brings means that the last few months have been very stressful.

It's countdown until Stanmore, only 19 days to go.  I wish this flare up would resolve itself because I've been waiting 16 months to get on this course! I really hope that I can see them soon!I will update you all when I hear anything more from UCHL.

NAS Self Advocacy Booklet Launch

5th April was the launch of the NAS self advocacy booklet, rather early morning bleary eyed I made my way to Bristol Temple Meads station to make my way over to London for the day. Assistance onto the train was arranged for the way there and went smoothly, I got a wheelchair spot for my powerchair and my friends and the others were seated around it. The journey itself was fine, although having to lift my powerchair out of the car was rather painful. On the London side was rather more interesting, trying to get a powerwheelchair and 4 passengers into a taxi was a challenge and a half, in the end we had to take it apart and put it in the front of the cab, but we managed it.

The launch itself was rather posh being held at the Wellcome Trust near Euston station. We had a spot of lunch before the main event started. The food that was provided was very tasty, I had some roasted red pepper houmous and potato wedges.

The gathering was in the basement of the building and was in a room that wasn't too brightly lit and was rather nice and quiet considering the amount of people there. There were people from autism organisations, the police, and some learning disability organisations too. There was supposed to be some press there but that didn't happen in the end.

When the event started the authors (myself being one of them) sat at the front of the room. The booklet was introduced, what it's intended use was and such. After the introduction each of the authors gave a small speech, this was the part that I was most nervous about. I gave my speech and while I was rather nervous inside apparently it didn't show. I got lots of congratulations on my speech and was asked if I wanted to do more public speaking!! The few days after I was getting emails saying how natural and relaxed I was doing my speech, it couldn't have been any further from the truth.

Getting back was rather interesting though. First there was the issue of how we were going to get back to Paddington, we thought we would get the bus but we missed the one going to Paddington and the next bus with the same number didn't go as far as Paddington. It was hit and miss as to wether the next one was going to be the correct one so we had to get a taxi in the end using the same method as on the way there. There was a mix up with the seating on the train on the way back which meant that the wheelchair spaces were double booked on the train we wanted to get. When we went to the assistance place we asked if the assistance could be changed because of that fact, to get off at Bristol Parkway instead of Temple Meads, I thought they would say no as it was only 15mins before the train. Instead they were rather receptive and took us straight to the train, the person was rather nice and understanding. It made my journey home that much easier as I could just chair from the station rather than having to get a 45min bus ride then chair at the other end.

I am rather glad to have been able to take part in the self advocacy project and will be willing to take part in more projects ran by the NAS.