My story.its not all bad

[uk40]

hi,
17 years ago i was diagnosed with crohn's of the large intestine(40 now).at that time i was really ill.the steroids got it under control and i started to feel normal again.flare ups were regular.my intestine would fill with blood but not too much pain.the doctor would prescribe steroids everytime a flare up occured. i would say every month.i was also prescribed pentasa 500mg 3 times a day.and put on a special diet.
being 23 the no wheat,dairy,etc etc was a pain and i was sure it was making me more ill.
i decided that eating normally was the way to go.as soon as i changed my diet back to how it was i started to feel so much better.when the doctor asked how the diet was going.i sad sod the diet and he basically said that if it made me feel better then continue because what the doctors know is limited and guess work most of the time.
my flare ups became less frequent to the point they stopped after 5 years.
i take 1000mg of pentasa 1 time a day and regularly miss taking them when i forget.i start to feel a little uncomfortable after about 3/4 days if i haven't taking any and that is basically my reminder to take some.
i have not had a flare up for over ten years and have not been to the doctor in over seven years for my yearly appointment.the reason why i haven't been
is basically that the doctor doesn't know anything crohn's unless its surgery time(is that really the only option?).my last appointment at the hospital was with a doctor that could hardly speak english and asked ME how to fill out the repeat yearly hospital appointment.think he was african.i have nothing against other nationalities but this was taking the piss.a wasted day off work.
70 per cent of people with crohn's will need surgery in their life. i just hope its not that doctor with the scalpel in his hand if it happens to me.

 

[nogutsnoglory]

I'm happy to hear you are in remission. Sometimes it's luck but sometimes its a minor tweak in our diet that can make a huge difference.

I'm concerned that you haven't been to a doctor in so many years. You are right that your regular doctor probably doesn't know too much about crohn's but why not see a gastroenterologist?

Even when you feel good, it's important to get colonoscopies and imaging to make sure your insides match your feelings on the outside.

 

[uk40]

hi,
it was the gastroenterologist that i used to see every year.he was the one that told me that the knowledge about crohn's is very limited.where it comes from?,what causes it?,why are more and more people being diagnosed?is it from the food chain?etc etc etc.basically the doctors know nothing. and to give me a foreign 'doctor' that was clueless to even write out a repeat appointment doesn't say alot for the nhs in the uk.
as long as i feel as good as a someone that doesn't have crohn's,i dont really see the point in going to the doctor to have a pipe stuck up my backside seeing that he already told me that their knowledge about the disease is limited.
he could tell me that i have a flare up but i would obviously know that already if it ever happened.
i have found the more i do that the doctors advise the worse my crohn's got.
diet....big list of thing not to eat.made me ill.i found that my body adjusted to all foods.the problem would be if you dont ever eat something,then you have it one time,you are not used to it and that can cause a problem.
i have managed over the years to take less and less medication.upto half of what i am supposed to take with the same effect.again my body would adjust.taking tablets surely cannot be good for you(he tells me that it is fine with no long term effects but my belief in doctors is not so great as they are only telling me something what they have been told)

 

[BeccaH]

Ahh yes... The NHS and IDB's...

I have had so many problems with the IBD clinic near me that I have just written a 2 page complaint letter listing all the muck up's that they have made. That was 2 weeks ago and I haven't had a response.

For me the nurses line is a life saver. You can ring the nurses direct with any problems and they will get you in if needed. Shame the same thing cannot be said for the doctors there...

It is worth an annual check up even if nothing changes and you feel as fit as a fiddle. I don't know anything about pentasa, could your doctor recommend you to reduce your dose, what (if any) are the long term side effects?

There is always medical research been done and new things are discovered often so they may have a better understanding of your condition now than they did 7 years ago.

My advice, give them a ring x


I'd just like to add that I do not class all of the NHS under this "stone". I have recieved excellent service from Rheumy and owe it to my doctor that I finally reached a understanding of what is happening.