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.

Stanmore 2014

On Monday 24th February I had my yearly catch up appointment with Dr Cohen.  It has been just over two years since my last rehab stay at Stanmore.  We've made a lot of progress in that time, I now have a powerchair which I hopefully soon will be allowed to use outdoors, I'm just waiting for an assessment to make sure I'm safe to use it outdoors. Things have been adapted in our flat so that makes things a bit easier around the flat.  We have power assisted doors into the building and into the flat, so I just have to press a key fob and the doors open, well when they work they do anyway! Last year we had an adapted kitchen put in, suited to my needs this makes using the kitchen in the wheelchair much easier.

Dr Cohen is really friendly and approachable, willing to listen and has a lot of helpful suggestions.  We had a chat and she is going to refer me to a bladder specialist at UCHL a urogynaecologist and I really need to get that looked at before I have any lower surgery (metoidioplasty).  She said seeing as I have a rectocele and a hiatus hernia that chances are that I probably have a cystocele/prolapsed bladder too.  I've had bladder problems for years, so it's good that it will finally be looked into.  My GP says it is probably stress incontinence but being someone in their late 20s it's kind of embarrassing having to wear pads and worry that you are going to wet yourself if you sneeze, cough, move too vigorously or can't get to the toilet in time.  

We also spoke about my swallowing troubles and she said that I need to get back to see someone from professor Aziz's team as they are the people who diagnosed the dysphagia.  It was only quite mild the last time that I saw them but this was a few years ago and it has got a lot worse since then.  Eating just really hurts and I often choke on food, drink sometimes even my own saliva.  

I spoke to Dr Cohen about my jaw problems, this is something that I've been having a lot of trouble with for at least the last 15-17 years.  Unfortunately Dr Cohen said that there really aren't any dentists in the UK that specialise in EDS.  There was one person that she could find that would be willing to work with patients with EDS and he is based in London, I don't remember the name but I will get it in my report from Dr Cohen.  The best placed service to help though is the community dental team as they are for people with needs above and beyond what a normal dentist would be able to cope with.  The problem is I've been trying to get referred to our local community dental team for a while now, Bristol Dental hospital tried to refer me but screwed up the paperwork and I was told that I didn't qualify for their service.  They said to get my regular dentist to refer me but they wouldn't do it unless I went in for another consultation, this wouldn't be a problem but they aren't wheelchair accessible.  They claimed to be wheelchair accessible but that would only be true if you were to have treatment in the waiting room.  The building was accessible but the treatment rooms aren't, the last appointment I was in my manual chair and I hoisted myself up the step and then my wife lifted the chair up, we could barely get in the treatment room though as it was so cramped.  So I'm hoping that we can sort something out soon as that was ridiculous.  

We talked about my second stay at Stanmore on the rehab ward.  This time it would be 2 weeks instead of 3.  I had been in contact with the lady who books it in as I had been given a date but it was only a few weeks after I am having surgery so it was a bit too soon as the course is so intense.  We are aiming for some time in mid June, that would give me 8 weeks to recover from surgery before going on the rehab course.  Just need to wait to hear back about that.  

All in all I felt that the appointment went well and although there is still a lot of stuff to work on we are making progress.  It isn't so much about curing as making life manageable with the right aids, appliances, pacing etc.  I'm next due to see her in another year, but I will probably run into her while I'm staying in June.  

Stanmore, 1 year on.

On Friday 5th April I went to RNOH Stanmore for my 1 year follow up appointment.  I still cannot believe that it has been over 1 year since I was in, the time went by very quickly. The last time I was there the ward was still closed after the flooding under the floorboards had happeend.  Now that has all been fixed and they have swapped the mens and womens wings around so it was quite disorienting.

The first part of the follow up involved a group session to refresh things in our memories, catch up with how everyone was doing and any helpful tips that people have picked up along the way.  It was very interesting and I was quite pleased that on the whole it was a positive experience with very few negative comments.  It was nice to see some familiar faces, I got chatting to some of the people who had been on a previous course too.  They hadn't heard of e-motion/power assist for manual chairs so I told her about that, so I was useful for something!

After the group session I had a one to one session with one of the psychologists.  I had seen her for a few sessions in the last week before I had left.  We talked about how I was doing and what I wanted to do in the future.  I expressed some concerns about ongoing needs going forward once I am discharged from there.  I was very concerned about the lack of knowledge locally, most drs don't know what to do with me.  We also talked about a possible second stay, 2 weeks instead of 3 weeks.  Part of the plan for the second stay would be intensive physio and psychology sessions, I won't need to go in for all the other sessions that I had already been to last stay.

They have made some changes to the program since I was last there.  One of the big things was that before you only routinely went to the psychology sessions if you were on the pain management program but not the rehabilitation one. Now both groups of people do the psychology sessions, as they figured out that both groups of people had needs for them.  I think that was one thing that was overlooked while I was there, as for my group you had to ask for the help and I wasn't confident enough to do so until the last week, days before I was leaving.

The psychologist is going to put forward the recommendation that I go for another stay, then it will be up to Dr Cohen to say yes or no.  Apparently I shouldn't have a problem getting in for another stay because I can show that I'm trying to do the right thing and am applying the things that I have been taught so far.  I'm seeing Dr Cohen in May so hopefully it wont be that long of a wait until I know whether I will be going again or not.