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.

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.

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.