Posted 2/16/2008 11:44 AM (GMT -7)
Maybe bringing someone with you may help.  If you have a spouse or other close family member who could be more demanding of getting results if you are still not getting the right answers.  I know that when I am flaring badly and tired and sick it is difficult to to be assertive because it takes so much energy. 

 
sore_guts
 
left-sided UC
400 mg Asacol 4 pills 3 times/day lialda 1 pill 3 times/day
making some very light attempts using Rowasa enemas just cant seem to do these
iron supplements 3 times 1/day
multi-vitamin 1/day
Digestive Advantage Colitis formula 1/day
 
 

Posted 2/16/2008 1:33 PM (GMT -7)
Hi, sorry to hear what you're going through with your docs - I've had the same problem with the NHS, you constantly have to explain yourself to new doctors all the time.
I agree with everyone else here - you haven't got IBS with the symptoms you describe, and your sigmoidoscopy diagnosed Ulcerative Proctitis, which is an Inflammatory Bowel Disorder (IBD). Whether their printer was working or not, they will still have the original written reports and your histology (this is the NHS - they keep all paperwork as long as they don't lose it).

Your last colonoscopy also states that "mild disease" was found - this also suggests an IBD, and not IBS.
Have you had much done in the way of blood tests? What doctors should be looking at is your CRP level - this is a marker in your blood tests that show the level of inflammation in your body, and is a good sign of the presence of active IBD. The reason you're put on steroids etc is to bring your immune system down so that the ulcers and inflammation go away, which stops the cramping, pain and bleeding. When doctors talk about bringing you into hospital for IV steroids, it's usually because your inflammation levels are high and not responding to the meds. For one doctor to raise this as an option and the next to wave you off with a diagnosis of IBS is simply ludicrous.

Usually the definitive way to diagnose IBD is via colonoscopy, at least for Ulcerative Colitis - I'm not sure about Crohn's.
I'm also concerned that the last doctor you saw seems to think taking lots of Imodium is a good idea. If you read the packaging for it, it says not to take it with Ulcerative Colitis without seeking advice, as there can be serious complications. Although many of us use it to tide us over for the occasional outing, it's really not a good idea to take a lot regularly, so your doctor really doesn't know what he is talking about, and clearly didn't take you very seriously. Take it easy on the Imodium if you have to use them until you find a decent GI and get their advice.

When's your next follow-up? If it's not soon, ring your outpatient's clinic but ask to be put through to the gastroenterology secretary - I've been fobbed off by the outpatient receptionists in the past, but the gastro secretary has managed to bring my appointments forward when I've been really ill or concerned.
The questions you need to ask are:
What are the results of the colonoscopies I have had, and what do they mean?
Do my blood tests show raised CRP (inflammation) levels? If so, why? Is it because of the IBD?
If my CRP levels are high, what are you doing to bring this down? (Are the steroids I am on high enough to fight this? If not, why am I on them?)

These are straightforward questions that any gastro doc should be able to answer with access to your notes. If they can't, then I would suggest filing a complaint, as it is unacceptable that they are faffing around with a clear diagnosis while you have to suffer. I've found you have to learn a lot about the disease yourself to be able to ask the right questions sometimes, which isn't the way it should be.

Hope some of this is helpful to you, and of course I hope they stop mucking you about and get you well asap.
DW

Male 30 Years Old.

Diagnosed Pancolitis June 2007

Currently 20mg Prednisolone, 12 tablets Asacol, 50mg Imuran (started Dec 07).

Posted 2/16/2008 3:49 PM (GMT -7)
Thanks for responding, Bum Deal, and welcome to the forum. I always feel at a loss trying to advise people as to how to maneuver through your national health system, because I'm not familiar with it. Good to have you here!
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum

Posted 2/16/2008 11:33 PM (GMT -7)
Fizzy,

I'm really sorry to hear your tale. It sounds like you need a doctor dedicated to your case so that you can call and check in with the same person who will make sure you are responding to medication, etc.

I'm sure you have your hands full trying to navigate the system. Here are a few questions I would ask the next doctor you see:

What is an IC valve and what does the colonoscopy finding relating to it mean?
Why couldn't they get into the small bowel? Is that common?
Was the prep for the procedure done well? If so, can you believe that the results of the colonoscopy are accurate?
How long did the colonoscopy procedure take? (maybe this isn't documented but it would be nice to know if the doctor looked for 2 minutes or the recommended longer period of 10-15 minutes)
Were biopsies taken from the colonoscopy? Were they all negative?

And last, I would question someone to death about IV steroids. It's not something I've ever had here in the States and I've been plenty sick and seen a bunch of very well-known doctors. The most steroid treatment I've had is steroid enemas or prednisone. IV steroids seem extreme to me.

I really hope you can find a compassionate, knowledgeable doctor who can get you on a good path to healing. Can you go outside of the system and get a consult with someone you choose?

By the way, isn't Britain's system one of socialized medicine? From what Judy said, it sounded like she thinks Britain has a national health insurance/healthcare plan, which I believe is very different from socialized medicine. Just curious! Thanks and I really hope you get some good care and fast.
-------
UC for the last ten years
Current Meds: 6MP since 2006
Past Meds: You name it; I've tried it.

Posted 2/17/2008 12:25 AM (GMT -7)
Julee, I believe Britain does have a socialized medicine program. The name it goes by is the National Health Service. I think that's where the confusion came from. Canada and many European countries have similar programs, or so I've been told.

That's why the recommendations I make are sometimes vague. I know the system there is different, based on what the Brits here on the board say. Their GP seems to take a more active role in treating the IBD, and they seem to see the specialist less often. Also, I'm not sure whether they have a choice of doctors or one is assigned. So I try to stay more general because I'm not so familiar with their healthcare system.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum

Posted 2/17/2008 12:27 AM (GMT -7)
Oh, and let me add when I said if the US had a national health care program, I was referring to a system like that in Britain, not to a universal insurance system. You're right, they're very different.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum

Posted 2/17/2008 1:28 AM (GMT -7)
You should be getting a small bowel follow through...crohns can affect the entire GI tract from mouth to anus and it can pop up and clear up since there really is no rhyme or reason to it...crohns cannot be ruled out for you because 1. family history and 2. your symptoms.

You need to find a better GI and get looked after properly...there is no bleeding with having IBS as you well know (unless there are hemmies involved).

Find a new doc and get them to do an upper GI series on you.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

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