My doctor will not investigate.. What shall I do?!

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Rocky robin7

Joined
Oct 25, 2015
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Hey All,

So, I am very concerned that I may have CD or UC I have all the symptoms, a recent flare (or so I think, it was the worst thing ever!!!) and my doctor is trying to tell me it's gastroentritis or IBS!
My brother and uncle both have CD, I've suffered with bowl problems for many years. I don't know what to do, it's so unfair they won't investigate.
My recent flare (or so I thinki) consisted of- diarrhea with blood and mucus, cramps, fever and I felt so unwell I couldn't move. After, I still feel like my insides are burnt and sore. It's taking longer for my insides to heal than the actually flare itself! Blood tests have shown severe inflammation!
Any advice would be much appreciated. I do understand that my symptoms are exactly the same as gastro so it's hard to know what's what!
 
Can you see a different doctor? Are you seeing a gastro specialist? Crohn's/UC does get dismissed as IBS, but with family history and blood results it seems really strange to not investigate. Have you had any imaging tests all really no tests at all?
 
IvyL said:
Can you see a different doctor? Are you seeing a gastro specialist? Crohn's/UC does get dismissed as IBS, but with family history and blood results it seems really strange to not investigate. Have you had any imaging tests all really no tests at all?
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I agree. Maybe a second opinion.
 
I've had blood test which showed high inflammation and I'm waiting for a stool sample result! I have spoken with different doctors and I even went to A&E with my suspected flare as I was really suffering- they are all palming me off sigh it's gastroentritis! . And to top it off I may loose my job because the doctors won't give me a sick note even though ive been off work for over a week, nobody bloody believes me!. It's so unfair!
 
Rocky robin7 said:
I've had blood test which showed high inflammation and I'm waiting for a stool sample result! I have spoken with different doctors and I even went to A&E with my suspected flare as I was really suffering- they are all palming me off sigh it's gastroentritis! . And to top it off I may loose my job because the doctors won't give me a sick note even though ive been off work for over a week, nobody bloody believes me!. It's so unfair!
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That doesn't seem right to me.
 
It doesn't seem right to me either. It costs money to refer for tests, I'm assuming that is why they are reluctant. How did you all get referred for your situations? I'm curious what symptoms you had before they refered you?
 
Have you been referred to a gastroenterologist via NHS? Is there a chance that your GP speeds up the process due to severe symptoms?
What about a steroid trial by your GP, if it was something inflammatory (your family history and your blood test results indicate that), your gastrointestinal symptoms should improve by taking steroids. I would ask my GP about that if I were you, but, of course, the best would be to be seen by a gastroenterologist as soon as possible.
If it's not possible via NHS, do you have private insurance? If not, your GP could refer you to a private doctor (e.g. Ramsay) who accepts NHS patients as well, if no other appointment can be offered to you.
 
In 1989, I had surgeries for a fistula and hemorrhoids. My body wasn't healing well from either. A surgeon determined that the reason was because I had Crohn's.
 
My gp is refusing to refer me to a gastroenterologist as they feel my symptoms are due at present to gastroenteritis (even though symptoms are the same for this and IBD so they said they are not sure what it is but seems more gastro) so basically I am being left with no medicine, no diagnosis and doctors unwilling to investigate my years of stomach pains and bowl issues. I may have to pay for a private consultation but I'm not rich lol its just so unfair!
 
That's frustrating! You have to be examined, as you have symptoms and also show signs of inflammation. Is there any chance to be seen by a different GP, if not, can you go there again with a printed version of the NHS pages saying that Crohn's can only be excluded by proper examination, which is colonoscopy in any case? No doctor can know what it is unless a colonoscopy and maybe MRI is performed. I don't know if a private GP can refer you to a NHS gastroenterologist, as far as I know, that might be a problem.
I'm surprised that even the A&E doctors told you it's IBS or gastroenteritis. IBS is a diagnosis that can only be made when your colonoscopy and MRI are clear. I would have expected that they admit you for further examination.
 
I agree about it being unfair. I have had Crohn's Disease for twenty five years. I am supposed to be in remission but recently I had signs of a flare along with about three black stools, which sometimes can signify blood. I had had blood work, a stool sample and an urine test. Most of everything came back normal so they determined that along with the Crohn's I have IBS. By the way, because of the dark stools, they are redoing the tests.
 
I had pure red blood in my stools!! And pretty much water so wasn't really stools lol... Apparently you can get this with food poisoning!!??! . I've never had that in my whole 30 years of living..lol! I saw an emergency out of hours doctor he looked at me and said.. You have Crohn's im certain of it! I've seen about 5 different doctors who say it's a bug, bacteria or something lol I can't win. I work with under 5's im pretty sure I know what bloody stomach bugs feel like!! I'm gonna go private. God knows where il get the money from 😔 what does a flare feel like? My brother has had Crohn's forever lol he is adamant I have that or UC
 
That does not sound like a proper examination either, to me, ronroush7. IBD and IBS CAN coexist but IBS is low-grade inflammation which can't be seen, while IBD can, but not by blood test, urine test and stool test with certainty. My blood results come back normal nearly all the time and I have also active arthritis.
I'm quite straight away with GPs and specialists when I think there should be more investigation. I also had situations where they asked me what I would expect them to do because they were not specialists but GPs. I really don't like the system in the UK that you are so dependent on your GP and on his decisions. As I moved recently I can't see the specialist at the moment and I was advised to go to A&E then if my symptoms get worse and worse before I have the gastro appointment, eventually.
 
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I wouldn't pay to go private, it's not necessary, and your GP still has to refer you for a private consultation, you still need your GP to agree a consultation is needed.

Also once you get a consultation, you won't be any further forward with diagnosis or treatment until you get tests done.
 
Lol I think I have it too!! I'm almost certain but I'm thinking colitis because of the burning sensation, I pray I am wrong, but doubt it. I'm waiting for some stool results to clarify if I had a bug, if that comes back clear then I think it's safe to say I need to be referred. They've got to there is no excuse. Ivy I think I can book a private consultation without my doctors say so as I am paying and it's not nhs funded! But I'm going to wait for my stool results. I'm just curious how everyone else got referred/diagnosed?

P.s I've lost 2 1/2 stone this last year! That's not normal for me.
 
Rocky robin7 said:
Lol I think I have it too!! I'm almost certain but I'm thinking colitis because of the burning sensation, I pray I am wrong, but doubt it. I'm waiting for some stool results to clarify if I had a bug, if that comes back clear then I think it's safe to say I need to be referred. They've got to there is no excuse. Ivy I think I can book a private consultation without my doctors say so as I am paying and it's not nhs funded! But I'm going to wait for my stool results. I'm just curious how everyone else got referred/diagnosed?

P.s I've lost 2 1/2 stone this last year! That's not normal for me.
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You still need a GP referral.
 
Weight lost over a year, diarrhea, blood and mucus in stool, strong family history of crohn's, all this calls for GI referral ASAP. Consider changing GP, this one is not proactive. when we have to fight with a care professionnal thats no good. The stool test you are waiting for is probably Fecal calprotectine. positive or not, it cant sign or exclude with certainty an IBD diagnosis. Only a GI is qualified to study your case imo.

In the meantime, I would take pictures of what you see in the toilet and return to the ER where you saw that doctor who thought you had crohn's. If you remember the name, call and ask for his/her schedule if that is possible to know, so you have the chance to meet gain. They could give you referral there or ideally book you with a gastroenterologist from the same hospital. good luck.
 
Lady Organic said:
Weight lost over a year, diarrhea, blood and mucus in stool, strong family history of crohn's, all this calls for GI referral ASAP. Consider changing GP, this one is not proactive. when we have to fight with a care professionnal thats no good. The stool test you are waiting for is probably Fecal calprotectine. positive or not, it cant sign or exclude with certainty an IBD diagnosis. Only a GI is qualified to study your case imo.

In the meantime, I would take pictures of what you see in the toilet and return to the ER where you saw that doctor who thought you had crohn's. If you remember the name, call and ask for his/her schedule if that is possible to know, so you have the chance to meet gain. They could give you referral there or ideally book you with a gastroenterologist from the same hospital. good luck.
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Agree
 
Thank you all so much for the advice and kind words! I will defo keep you all updated on what happens.

I am waiting for three lots of stool sample results - fecal caloprotectin test before the flare, and two test for bacteria and bugs. I guess they are trying to rule out an infection and then if need be they will refer me (I am hoping!!)

By the way do any of you have abnormal urine test results due to your conditions??
 
and wow @ronroush7 you lost that much weight!! That is a lot for one flare. How long was that flare for? Iv'e always struggled to loose weight, strange how I have been unwell and it's just dropped off. That's how I know something is wrong. Some doctors should listen to their patients!!
 
Rocky robin7 said:
and wow @ronroush7 you lost that much weight!! That is a lot for one flare. How long was that flare for? Iv'e always struggled to loose weight, strange how I have been unwell and it's just dropped off. That's how I know something is wrong. Some doctors should listen to their patients!!
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Yes. They should listen to their patients. In 1992, I had an abscess that lasted three months. That was when I lost 34 lbs.
 

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