Gastroparesis or side effects?

Hiya notlob,

Yes I have very similar problems to you and you will find a lot of people with EDS who do.

If you've had this level of faecal impaction a few times , I think you have a more than very good case to get yourself referred to Prof. Quasim Aziz at Barts. Hospital London.

Prof A only takes people like yourself, ie he specialises in treating people with connective tissue disorders. He is a neurogastroenterologist and understands PoTS and its interaction with the gut symptoms.

Because of your extreme symptoms (the chronic constipation and bowel impaction), you really want to prevent damage, or prevent further damage, to your bowels, from all that wear and tear on your delicate EDS tissues. I would make that very clear to your doctor when you ask for a referral.

There are probably some articles by Prof Aziz on the HMSA website, but if not there will be his contact details, and relevant articles by Dr. Hakim.

Prof Aziz accepts tertiary referrals, so you would need to get referred to a gastroenterologist and get the gastroenterologist to refer you to him. You could bring his details to the consultation and explain what you've explained here.

How he can help:

I was lucky enough to be referred to him, and it has helped me tremendously.

He had extensive tests done, and discovered all the damage done to my bowels by EDS. I was diagnosed with borderline slow transit, gastroparesis, and various bowel injuries including nerve damage, and an intussusception.

He sent me to his colorectal nurse specialist, dietitian, and so on. The treatment I had is conservative management, and includes bowel softeners, gastroparesis meds, etc., low FODMAP diet, education from colorectal nurse specialist on better evacuation technique, and so on.

For each patient treatment is different and he is thorough. And, he is one of the few doctors that can diagnose PoTS and EDS.

The treatment has prevented further crises, and should prevent further damage to my already damaged tissues.

With the clearer bowels and the low FODMAP diet, there is the possibility of a flatter stomach too! Always a motivator.

One person I met who had been treated by Prof A, had got so run down with all the GI symptoms and slow transit that they had got every infection going, even shingles. Prof Aziz' treatment changed all that.

I hope your doctors see sense and send you to him. It'll save them a packet in the long run as well as saving you all the horrible symptoms you've been having.

I do apologise if this is information freely available on the EDS forum. I haven't had the time to check it because although my major complaints are EDS III and PoTS, I have been dealing with a new thing, Atrial Fibrillation (oh joy). So I've been spending my time on the AF Association bit of this site to learn how to deal with it.

I'm sorry you've been having these problems and do hope you get sorted out.

Hi,

Thank you for your reply, it's very helpful. I have an appointment with a gastro. consultant on Thursday and am hoping he is fairly clued up on these things. Although if he's anything like the rest of the drs. etc. I've seen lately I'm not very hopeful. When you tell them you have EDS and POTs they treat you as if you're imagining all the symptoms.

I will try to get referred to Prof. Aziz if I can - at least I will be taken seriously!

I hope you soon get some help with your latest problems.

Good luck and thankyou.

Hiya notlob,

Thankyou for your reply, I'm really glad if this can help.

Do you get your clinic letters from consultants copied to you? It wouldn't hurt to bring the letter with the diagnosis in, for the PoTS, and for the EDS.

If you don't get them copied to you, there is still time to get one of your GP's (or their staff?) to print them out for you. You could phone the Practice Manager and explain you need them and pick them up from the surgery for speed.

Here's the benefits:

When I was rushed to A&E recently, I had my PoTS diagnosis with me, & my EDS UK card. The doctors were very grateful, and I was treated with respect.

Then when I'd been admitted, there was a ward doctor who said 'oh, do you think you've got PoTS?' (Actually he was really nice, he just had to ask). I whipped out the letter, "would it help you Doctor to see the clinic letter?" Instant respect.

Dammit it was almost disappointing after a lifetime of being treated like an idiot! I was like grrr, come on, where's the fight!?

And, he telephoned the Autonomic Unit (who diagnosed me, and their details were on the clinic letter), for advice about my treatment. He kept the clinic letter in my notes on the ward. (So always scan them, keep them on disk, and only bring a copy. If you have to bring the original, tell them they can photocopy but must hand it back).

If you don't have an EDS UK card, would it help at all if I scanned mine in and emailed it to you? You would have it for moral support.

Then later you could buy a few on the EDS UK site, keep one in handbag, one in purse, and one in your notes at the GP surgery.

Sorry if I am telling you what you already know.

Best wishes for Thursday.

Hi,

Thanks for all your good advice and support, I'll let you know how it goes with the Gastro.

Thanks notlob, I'd really like to know how it goes. I'll be thinking of you.

I have found that consultants like to ignore this problem or even tell me it doesn't exist leaving my GPs helpless, my Sister was lucky enough to have an ileostomy in 1960 this helped her enormously but still left her with some food problems which she overcame, by process of elimination, but I am left with severe pain and digestive problems. I hope you have better treatment than I have.

It's so difficult having to battle the medical establishment with all these problems. I'ts bad enough feeling ill but when you have to try to convince these people that your symptoms are real it makes everything so much harder. You have to almost diagnose everything yourself and travel long distances and pay for private consultations in order to get answers. The chances of getting diagnosed/treated/taken seriously by the NHS are virtually nil.

How did it go?

Hi,

Thank you for asking.

It's got a bit complicated now. The consultant thinks the upper abdominal pain is from either bile duct stones or sphincter of oddi dysfunction, associated with having my gallbladder removed 19 years ago. So he is arranging for an ultrasound endoscopy to check this out.

I definitely have delayed gastric emptying but it could be from the Nortriptyline which I was given for migraines. Apparently I should not have been given it as I already take antidepressants and the two together will overload the system and can cause gastroparesis. So I'm going to come off the Nortriptyline as it's now become clear that my 4 recent visits to A&E were the result of anticholinergic poisoning or seratonin syndrome due to taking two lots of antidepressants. This was made worse at the hospital since they didn't know what the problem was and gave me intravenous opiates and anti-sickness medication (more of the same stuff) No wonder I was completely off my head! Just proves my mistrust of the general medical profession is well deserved.

But I'm still alive and kicking so I'll see what the next few weeks brings and if the problems resolve - if not I will go "back to the drawing board."

best wishes to everyone who is suffering out there.

Hiya notlob, thanks for letting us know.

Grrr, so furious with your GP and pharmacist! They really should have looked out for serotonin syndrome.

And it seems that you have well enough to be dealing right now!

But, when you do want to go for Prof A, all you have described re meds and migraine is relevant because he is a neurogastroenterologist.

(Being neuro he would be able to take an overview on the issue of meds, as people with the neuro issues seen in EDS POTS have unusual reactions to meds, and migraines can be part of the picture for EDS & POTS & gut issues too).

(Obviously it wasn't POTS or EDS that caused serotonin syndrome grrr it was some nincompoop doctor and your ninny pharmacist didn't pick up on it... Grrrrr. Did I say grrr? Well grrrr!)

It sounds like you have someone attending to your other issues at the mo and want to get on with those before seeing Prof A. (and I expect it'd be a wait anyway).

STARS (Syncope Trust who actually deal with dysautonomia so including POTS), might be good re migraines, you could tell them re the gastroparesis and meds issues too to give the full picture.

Who was it that noticed your meds were all wrong? The gastro? Very glad they did. D'you think maybe you've got someone more thorough now, who will get to the bottom of the stuff you're dealing with currently?

Anyway, I am sorry you have been going through so much, and really glad it was a productive consultation for you.

Best wishes for getting sorted out, one step at a time...

Boombiddy