St Bart's Gastro / gastroparesis

[Stone]

Could be worse, I had to wait three hours for an CT scan once and you're not allowed to eat anything that day! I was getting pretty grumpy by half-two

Personally I would always work on the assumption that everything runs to schedule, there's nothing worse than spending a long time/huge effort travelling and then having to beg them to see you when everything conspires to make you late...the one time I tried to stay in bed half an hour extra was the one time I got it wrong

Stone

[evenwen]

I had an hours long wait before too. The staff didn't seem at all surprised, so i assume it is pretty common...

[jojackson]

I always aim to turn up to appointments at least 15 minutes early, but expect to wait an hour before being seen! That's almost invariably the case at respiratory clinics (the Royal Brompton is a blissfully efficient exception). Non-doctor-led clinics seem to run to time more often, but Murphy's law dictates that the one appointment to which you turn up late will be the one clinic that's actually running early. This happened to me on Friday, and I was so cross because I'm almost never late for anything, and I'd told myself that it didn't matter because they are always running late anyway. D'oh!

[roqchiq]

Thanks for your replies. I think I'm going to have to find myself a long - paperback - book to take with me.

[keenly]

Hi everyone

what is Professor Aziz like and what test does he do? Are they invasive?

[Rosie]

Hi keenly

Have a read through this thread from the beginning, I know it is a bit long but it does include some posts from people who have had various investigations. Sorry, I can't help more.



Rosie

[keenly]

Hi. Yes i have read this all.
I meant specifics. Does Pro Aziz use ct scans with barium meals etc?

what sort of test does he do? I would really liek to know.

[barkingmad]

Hi Keenly,

Prof Aziz will do any tests that he thinks are relevant to you. So there is no prescriptive pattern he will follow. He will obviously do a clinical exam followed by a history and then make decisions on what he wants to test you from there. Sorry, we cant be very helpful.

[jojackson]

Prof. Aziz is extremely nice and absolutely committed to his patients.

He uses lots of different investigations, depending on the needs of each individual. Some of the tests that I commonly see requested do include barium swallows (liquid and solid) with fluoroscopy, along with gastric emptying tests, colonic motility tests, oesophageal manometry with impedance (with or without cough detection), etc.

Prof. Aziz works closely with a number of different specialists, including Professors Grahame and Mathias.

[Itigo]

Well, after my nausea settling completely for about 8 weeks, it came back at the end of June. Have just seen my gastro (1st appt available) and he has no explanation. Am back on the Domperidone but it's not having that much effect. If it was working he said he'd just give me an authority for a ridiculous amount and I'd take it ad infinitum. As it's not, the next thing to try is a gluten free diet for 3-4 months under a dietician.

Just a quick question: Does Domperidone have a cumulative effect? I ask cos I didn't take it for a couple of days this week after I nearly blacked out after an episode of arrhythmia and was worried the drug had caused it.............

Thanks guys. Bit fed up with it all now...........

[Eloise]

Nope - it doesn't accumalate - just been looking. The levels in your blood stream after a few weeks of continuously taking it is the same as after the first dose! Was you taking any other medication at the same time such as erythromycin (antibiotic)?

[Itigo]

Thanks Eloise! Nope, was taking nowt else........ Think the NSVT was a random event (haven't had one for a while). Just the fact that it was much more severe than usual made me wonder........

If it isn't cumulative then I can truthfully tell the Dr it isn't working (without worrying that I stuffed up by not taking it).

Don't know what we'd do without our friendly pharmacist!! Thanks again............

[lil_miffy]

I spoke to dr aziz at the residential about the gi issues and he said that i need a referral to him. He said it sounds like there is alot going on through out my whole gi system. he wasnt surprised at all when i mentioned i use the peristeen irrigation system but mentioned something about tubing at the top of the bowel to irrigate from the top Seems like my gi issues might be alot worse than i thought and certainly need more investigation and support than im getting at the moment with my pct. My local gi consultant bascially said 'its your hms, eat more veg and learn to live with it'. he refused to perscribe the irrigation treatment so i had to get prof bird to do that.
For the past month iv been realy struggling with eating solids. my stomach seems to not switch on till about 5pm so before them im on liquid meals and forcing them down becuase i have no appetite. Iv had phases like this on and off for years. Im not going to ask to see my local gi dr again becuase he's useless and they just say 'ibs' if its not crohns as my mum has.

Im going to wait till i see my new bendy specialist at gateshead and ask him to refer me rather than my gp as he can mention all the relevenat gi issues.

Can i ask when you do see dr aziz does he do all the tests on the day you see him?
I will be travelling down to london from durham on the train which is a good half day travel. If theres alot going on inside then i expect there will be more than one test and it imght be a full day job. How does dr aziz manage patietns that live far away in terms of the testing and diagnostics and followups?

thanks.
cx

[lil_miffy]

had a read through of the entire thread and thought i would list my problems here as it seems more relevant here than in the main bowel thread.

My main issue is severe stasis and loss of anal function; so my bowel muscles don't contract to move waste along and i can't push anything out when it eventually gets there. This means i also get incontincne if my stools are loose from laxatives. I have to use colonic irrigation ( i do it at home every day) to go to the toilet but there is still severe solids and impaction at the top of my bowel which the irrigation doesnt seem to budge. Soemtiems i have to irrigate twice becuase there are solid lumps of stool that get stuck. When i do irrigate i get alot of what looks like 'skin' and tissue along with just the same water i pumped in coming out (sorry for the details). I still have to use digital manipulation (which basically means using your finger to move the stuck bits around to try to get them out-gross i know). Iv noticed when im doing this rather than a nice long tube my bowel inside has pockets and 'caves' that the solid lumps get stuck and hide in. Also my rectum is like a really large space rather than a tube and I cannot feel the walls or msucles. Stools get stuck inside here too becuase there are no walls to guide the stools out. dr azis mentioned 'bowel collapsing' so i wonder if this is what it going on. Im supposed to still take large doeses of movical (super laxative you drink) to thin my stools but it makes me vomit loads and takes days to filter through my stools. im then incontinent becuase of how thin the stools are so i prefer not to use the movical.

Iv suffered from severe constipation and impaction since i was a baby and been told repeatedly its 'just ibs, eat more fibre, veg, drink more water etc'. every now and then they test for crohns because of mum and when that comes back clear they discharge me and tell me to just eat better. I mainly eat fruit, veg, bran based cereal and soups. For snacking i eat berries, bananas and yogurts. My diet is very healthy and i have to drink gallons of water for the irrigation so i know its not diet related.

Eating wise my appetite is non-existant until around late afternoon. until then i can't force food down. even putting it in my mouth and chewing feels like torture. Its hard to describe because its not painful of uncomfortable its more that my brain will not allow me to chew and swallow. Iv had anorexia a couple of times when i was younger which started after a a phase of this non-appetite which i assumed was due to depression. It always startes like this then gets to the point where even if im hungry i cant eat. Knowing what i do now about how hms affects the gi system im wondering if it was actually real anorexia or simply this issue with hms.
I also feel very nauseaus alot of the time so when i do eat i can feel very sick. I sometimes have to irrigate after eating becuase my stomach just doesnt seem to empty. Iv woken in the middle of the night a few times in the past 6 months and had to rush to the loo to be sick. iv then spent up to an hour just constantly vomiting.

Other isues that are related include my bladder. I have to really concentrate and push hard to urinate. My continence nurse said this was just becuase of my bowel being so impacted and that it would go back to normal once i start the irrigation treatment but its got worse. It seems the pressure from the impacted bowel was scutally helping, now im going to the loo and sometimes sitting for ages and nothing happening while still feeling desperate to pee. I then get real bad pain in my bladder becuase its so full. this is what it was like before. I also have some urinary incontinece that is getting worse again since irrigating. My nurse said before that i my have to catherterise before we noticed how bad the bowel was so im wondering if thats an option again. hoping its not.

Its really reassuring to know that this could all be hms related and not emotional or simple diet issues.

[jojackson]

Hi Miffy!

Just thought I'd write to tell you that you are very much not alone with your bowel and bladder issues! The bladder thing I have been told is autonomic - I feel as though I'm doing all the 'normal' things, but it's as though the message for the bladder to 'open' just doesn't get through for ages, so as you describe, I just sit for ages and wait!

Prof. Aziz - I can't help much with the procedure for his NHS patients, but for his private patients he sees them for 45 mins to an hour initially in the outpatient department and then the tests are arranged after that. We have some patients who come from very far away (think Qatar, Ireland, America...) and they are often admitted for a few days so that all the testing can be done in one visit. Prof. Aziz also often has telephone appointments with his patients after he's seen them the first time, as sometimes that's easier for the patients, particularly those with mobility problems, or who live far away. Prof. Aziz works closely with Prof. Grahame and Prof. M. (autonomic specialist), and also with specialist GI nurses (they use the Peristeen system quite a lot) and dieticians. A lot of his patients seem to try the FODMAPs diet, and some report getting a lot of success from it. It might be worth looking it up, or asking a local dietician about it while you're waiting for your referral. I think that it looks a bit scary (it's certainly very restrictive), but if your diet is very restricted anyway, it might be worth giving it a try.

Hang in there - I know that a lot of Professor Aziz's patients have almost lost hope by the time they meet him, but there really are things that can be done!

Jo