anybody from england?

i found out i had uc 2years ago and i still aint got a clue whats going on really. i have only seen my concultant once, is that normal? and my doc hasnt a clue what uc is, whenever i try to discuss it with him he just tells me to ring my concultant..... nobody seems to know anything. Have i just been unlucky or is it this country, america seems to have it all sorted by reading some peoples posts. xx

Hi, I'm in England. I was diagnosed about three years ago but did get the runaround from my GP practice...being told I had haemorrhoids and then that I was stressed.

I'm not too lucky with my consultant as he doesn't seem to have the time to talk about things, and we don't have a specialist nurse at my hospital. I have got more information from the internet, but mainly from this forum . Another site in the Uk which is good id  www.theibdclub.org.uk  .....they sent me a free information pack which was good. I also joined the NACC , another support organisation in the UK.

Memmie,

There is much better GI's and much better medication out there than you have been exposed too. You are being short-changed. It might be time to seek some other doctor / hospital. None of the regular members of this forum would stand for this kinda healthcare. Hopefully hey will chime in with their own suggestions.

D

Hi im from England ( northampton)

I was diagnosed comingup 5 years ago with Proctitis, few flares but on the whole manageable until Jan 07 , problems started , went to my doctor who i had had a lot of faith in, told him it was getting  ALOT worse and could it have progressed to Colitis to which he retorted " oh if you had Colitis believe me you would know about it " me thinking well he is the Doctor , must know what he is on about ill just do as he tells me - BIG mistake , 4 months of the worse D , blood loss, anemia, calcium defiency, going loo 25 plus times aday ( he never asked me once how many times i was going a day ) , no sleep , pain .. i could go on , i finally get another colonoscopy done and its Pancolitis !!!! In hospital for a week and a few days away from that Toxic mega colon malarkey !

So the moral of this story is DO NOT be fobbed off, keep going back, keep telling your doc how you feel , good luck and hope you get sorted .

oh and he was so sheepish when i had to go and see  him  when i was better , Good,  so he should have been !

Tab x

 

chiming in (in the US). Definitely find another Dr., not sure how your healthcare system works but I would definintely research and see what you can do to get to a Dr. that is knowledgeable, accessible, listens and responds well to you. You have to be your own advocate and know how to work the system you are in.

I'm staying w/my GI currently only b/c I am confident in my treatments b/c of this board, my own research, and he is working well w/my Kidney Doc, but I know where I will go for my next Dr. when the time comes.

Don't feel bad though, at first I did not know much either, but you will learn.

all my best.

memmie,

I spend about half the year in England and the rest of the time in the USA.  The USA doesn't have it sorted but I think there is more flexibility in finding and choosing the right doctor - it really is a matter of finding a practice where they know what they're doing and have the time to answer your questions and take your calls.

In England, the doctors I have seen seem very knowledgeable but there seems to be a lot more paperwork and bureaucracy there, so they tend to get caught up in the system.

Also, I've found that if you ask questions and show that you've educated yourself on UC, you'll get better feedback from the specialists.  It makes them aware that you need to understand the treatment and will question the treatment. 

The first doctor who saw me at a specialist GI clinic in England last year turned out to be a research fellow doing the rounds of the various units in the hospital.  I made sure I asked a lot of questions - she ended up having to take out a book to research some of the answers to what I was asking, and even popped out to speak to a senior adviser to make sure they were doing things the right way - the next time I went back they had assigned me to be looked at by the head of the clinic!.

also, one other thing, before I was dx'd, I had to see my primary care dr. to get referred to a specialist (had an HMO at the time, then went to PPO, now back on HMO, PPO is just too expensive). My primary care did not believe that I had UC (even though My Mom had it and I told her that) thought my problems were a result of eating Wow chips (around that time they just came out and the olestra in them was causing people some bowel problems). I was so ticked off. Then I got worse and called to get in to see a GI and they told me I had to wait 3 months and I told them well I have toilet bowls full of blood, I don't think I will make it. They got me in the next day.

for any who don't know
HMO - you need to see your primary before you can see a specialist
PPO - you can see who ever you want when you want

I'm on an HMO now b/c the PPO option for my company costs a lot more than the HMO option, also now I know how to work the system and can change back to PPO if I feel the need.

And don't forget that apart from changing your GP, if you are not happy with your GI you have the right to change to a different one.You have this for life, so don't put up with being treated this way.

Lynn

I am from England/London, and currently a patient at Hammersmith Hospital.

Not too happy with my treatment their and might try the St Marks alternative suggested earlier.

G

I live in Morden, so not far from Croydon. I am currently waiting to be diagnosed. Had one sigmoid in december w/ biopsy taken, all that came back from that was that my colon was inflamed but no further info. Finally saw a GI two weeks ago, who just took my history and said I will have to have another sigmoid within 2-3 weeks which will go further up and will take more biopsies. Also had some blood tests done. So, just about to go into week 3 and haven't heard a thing about the appointment. So I think I'll be on the phone on monday!! Being treated at St Heliers.

Btw, my symptoms are bleeding and mucous which i've had for a long time; interestingly I stopped having alcohol about 4 weeks ago (i drank just a glass of wine every evening with my dinner!), switched to really plain food, pretty much cut out sugar (from chocolate rather than fruit)...and the bleeding has slowed right down. I even had a couple of days last week with no bleeding or mucous, which is frankly a miracle. It's come back a bit..but seems alot better now than it was last year...also have had 5 acupuncture sessions and this is ongoing.... anyway.. .I know I'm not "officially" yet suffering with UC, but having scoured long and hard for causes of my symptoms, UC seems to be the only one that fits..sorry, I've waffled alot now..

Hi Lynn,

It's a small world! I'm female, 36yrs old. I've been living here for a couple of years now, after being priced out of Tooting!! I've driven through Coulsdon on the way to Gatwick a few times :)

I'm not receiving any treatment at the moment. The consultants name is Mr Mahmood, I'll keep you posted on how it goes. At the moment, I'm just trying everything holistically to see if it has any effect at all. When I had the sigmoid in December (that was done at the Morden Hall Dr's), the consultant there said to just cut out spicy foods. My acupuncturist (In Carshalton) has told me (from a traditional chinese medicine) point of view, to only eat cooling foods since the colon is inflamed. He suggested switching from red wine (which was what I used to drink) to white wine> I did that for a little while, then just stopped completely. However I did have a glass of red wine after about 3 weeks abstinence and my stomach instantly turned into a football and I felt very grotty. So it is very interesting. I really just want to get diagnosed at treated quickly as I've lived with this problem for a few years now, misdiagnosed a couple of times as piles, then went back last April to the doctor insisting i wanted it looked at further. It's taken this long to get seen. Very frustrating. I also want to start a family (and have just had a mc in the last few weeks). Sorry, maybe all a bit TMI...feeling just very frustrated by it all at the mo!!

Certainly is a small world, I live in Morden and was born in St Helier (but I only venture into Croydon to go to ikea!)

I get treated at St Georges and my gastroenrologist is excellent and so is the rest of the team there.

Love in a mist,
Your treatment so far doesn't sound to good.
I've only been diagnosed for about a year. When I saw the consultant the first thing he did was book me in for a colonoscopy. Biopsies were taken and UC was confirmed right away (this was after my useless GP took 2 months of me going in every week before they would refer me).

But anyway, since being referred things have been far from straight forward, at one stage I was prepped for surgery and was about 48 hours away from losing my colon. But at least the consultant has always been there every step, explaining things to me. I can call up his secretary whenever I need to book an appointment or even if I just need him to call me if I'm concerned about something.
What made me go from being a complete wreck to coming to terms with this was definitely the consultant and his team.

I thought my 2 month wait was bad, if this has been going on for years for you with no proper diagnosis you should start complaining or ask your GP to refer you to someone else (St. Georges, St. Marks or anywhere that will get it confirmed and treated!)

& memmie25, it does sound like you have been unlucky with your doctors and consultant, might also be worth changing until you find one you're happy with.

Post Edited (Clackerooney) : 3/9/2008 6:19:58 PM (GMT-6)

I only go to Croydon for Ikea too, lol...and then only on week nights!

Clackeroony thanks for the advice. I've still not heard anything so am going to phone St heliers tomorrow and see if i can speak to the consultants secretary. Though I only have a main number for St Heliers..I'm sure I'll get there in the end. I used to live literally very near to the side entrance of St Georges...I know it quite well in there.. I was given the choice of that hospital but opted for St Heliers as it is so close to where I live.