Stuck with what to do now

[newfromscotland]

I was diagnosed a few years ago with IBD. They have never said what form. I had blood & diarrhoea and a colonoscopy showed that the last 15cm or so had lots of apthous ulcers.

I was fine for some years but 1.5 years ago started to get intermittent localised pain in the lower right. I had a regular check up with the gastro doctor some months later and told him about it. He said it sounded very much like ileitis. So I had a MRE scan 8 months ago. The report said "no convincing evidence of Crohn's disease". So the gastro doctor said it's nothing to do with him and gave me another regular check up (in 6 months from now).

My GP says he doesn't know why I have this pain and that's it, he left it. I don't have any medication at all. Now there is no-one else to look into this so I'm left with the pain. It happens a few times a day and often wakes me up at night for a few hours. It comes and goes a bit, some months it is pretty bad and sometimes OK. I go to the loo in the morning about 3/4 times. I haven't lost weight although I eat a lot and am always marginally underweight. I have anal fissures (the nurse confirmed that).

I'm in the UK and seem to be stuck. I lost my job as I couldn't concentrate. To see a private doctor I have to have a GP referral and they won't give me one. I was wondering if anyone has any idea what I can possibly do? The only thing I can think of is to move to another EU country and try there. But that seems ridiculous.

I'd really appreciate any ideas anyone has. Is it possible to have ileum inflammation but a fine MRE? Or am I silly to think like that.

 

[alex_chris]

First, very sorry you have problems but no definitive diagnosis or treatment plan. That's just not good.

To answer your question, it is definitely possible to have Crohn's or UC which can not be diagnosed via an MRI. A diagnosis involves taking into account diagnostic procedures such as a colonoscopy, an MRI, an endoscopy and possible an ultrasound. Additionally, usually samples if tissue are taken during the colonoscopy and sonetimes the endoscopy and analysed in the lab. Furthermore, your general symptoms, a blood test (specifically inflammation markers) and a stool sample analysis. Usually, taking all this together gets you to a diagnosis although in some cases there is no definitive diagnosis even after all these points taken together.

The only thing I can recommend is to find a GI who specializes specifically in IBD such as Crohn's on the internet (maybe some Scots on here can provide recommendations) and ask a new GP to refer you there.

 

[UnXmas]

I'm in the UK and seem to be stuck. I lost my job as I couldn't concentrate. To see a private doctor I have to have a GP referral and they won't give me one. I was wondering if anyone has any idea what I can possibly do? The only thing I can think of is to move to another EU country and try there. But that seems ridiculous.

Did your GP give a reason for not referring you? You shouldn't need to go private - in my experience, the only real benefit of a private consultation is that the waiting lists are so short. But you can get a really good private doctor, a really good NHS doctor, and bad private and NHS doctors too. In fact, many doctors do both. I've had private consultations a couple of times, but it's not really worth it since the doctor will not really be able to do anything until tests have identified the problem, and having tests done privately is very expensive. When I had a private consultation, the doctor then simply arranged all the tests he wanted to do on the NHS, so all I really gained was having a very prompt initial consultation, then it was back to waiting lists. But in terms of quality of care, I don't see much difference between private and NHS - it all comes down to whether or not you get a good doctor.

A GP should be obliged do a referral, whether to a private consultant or to an NHS one, if the patient has not yet had his/her symptoms diagnosed. If the patient is not happy with that consultant, he/she is entitled to ask for a second opinion, and therefore the GP must do a second referral. After that another referral should be done if the patient develops new symptoms of if his/her symptoms worsen. But a lot of it is left to the GP's discretion. It seems unreasonable to me that they will not do another referral when you have undiagnosed pain.

You should also be getting pain relief medication, even if you don't have a diagnosis, which a GP may be able to prescribe without needing a consultant.

I think your first step should be finding a new GP, one who puts some effort into trying to help you. If you've only seen one consultant, ask for a second opinion. You are entitled to that. You needn't be considering going abroad, or even privately - you're right, that is ridiculous. Find a new GP, and get them to refer you to a new gastroenterologist.

 

[Axelfl3333]

Go back to your gp practice and see someone else and just tell them politely and if that doesn't,t work put your complaint in writing to the practice manager.i recently had a non crohns issue torn rotator cuff in my shoulder cortisone injection was suggested but only after physio phoned back after physio saw a different go cortisone injection done.go back

 

[newfromscotland]

Thank you all so much for your thoughts, it's really helpful.

It's not that I'm fixed or even want to see a private doctor, it's only that the gastroenterology consultant here says it's nothing to do with him. Actually it's not one guy, they work as a group together and you see at random whoever on the day and they read the notes from before before they see you (I think).

The GP says I don't need another referral since gastro decided it's not to do with them "and I wouldn't know who else to send you to, I don't want to send you all around the hospital". But I can get an appointment before 6 months time if I have a change in symptoms.

About pain relief: the GP (who didn't prescribe anything) referred me to the pain clinic. They said it doesn't sound like nerve pain but "organ pain" and so there would likely be a reason. They didn't give me anything. It took half a year to do that much.

Axelfl, that's funny. I also had a shoulder thing and only after switching physios after a couple of years did the second one say there is some problem and eventually referred me to orthopaedics!

So overall I think I will change my GP and see if the new one will actually help.

 

[DEmberton]

Actually it's not one guy, they work as a group together and you see at random whoever on the day and they read the notes from before before they see you (I think).

I'm sure that's the case with mine too. I've seen three different consultants in four visits.

I go to the loo in the morning about 3/4 times.

Do you mean 3 or 4 times each morning, or 75% of mornings?

According to the book on IBS I bought a few years ago, about 20% of people with "IBS" actually have musculo-skeletal problems. That's characterised by abnominal pain, but no bowel problems. From what you say I'm surprised you haven't been told IBS yet.

 

[newfromscotland]

I was meaning 3 or 4 times each morning.

No, they didn't say IBS either. Although looking that up it doesn't seem to fit either.

 

[DEmberton]

IBS is just code for "we don't know". Usually that's what they say when they can't find a cause.

Have you tried changing your diet? Whilst waiting for the NHS I tried the elimination diet - didn't do me any good of course, and also did a home celiac disease test as I had no idea if the GI had done that, which was also negative. Does the pain go away if you don't eat?

 

[newfromscotland]

I tried changing what I eat only to some extent and I haven't tried not eating at all. I could try both of these for sure. I hadn't/haven't really connected it to food. This is a good idea, thank you.

 

[UnXmas]

It's not that I'm fixed or even want to see a private doctor, it's only that the gastroenterology consultant here says it's nothing to do with him. Actually it's not one guy, they work as a group together and you see at random whoever on the day and they read the notes from before before they see you (I think).

Often you'll get a letter saying you'll be seen by the consultant "or a member of his/her team". I.e. you might see less superior doctors. Although that isn't necessarily a bad thing - they can still be good doctors, even if they're not top consultants - I think it's a good sign that my surgeons always see me themselves. Especially if you're seeing them long-term, they need to get to know you and your condition.

I don't understand how the gastroenterologist can just dismiss you like this - one MRE doesn't mean he's excluded all gastroenterological possibilities, and your GP should "send you all around the hospital". If the gastroenterologist insists it's not a gastro problem, your GP should be sending you to another specialist - it's got to be someone's area of expertise!

 

[newfromscotland]

I don't understand how the gastroenterologist can just dismiss you like this - one MRE doesn't mean he's excluded all gastroenterological possibilities, and your GP should "send you all around the hospital". If the gastroenterologist insists it's not a gastro problem, your GP should be sending you to another specialist - it's got to be someone's area of expertise!

I don't understand either and did ask him to clarify. His argumentation is: "the [MRE] scan was to answer a very specific question which it did. We will now wait and see unless there any significant changes in your symptoms".

I assume the wait and see means "you now go back to the every 12 month appointment for monitoring only" category.

It's pretty weird. When it's sore (lasts from a few minutes to a few hours) I more of less feel I can't take it and to go to A&E (I never have, it's not anything new and when it started I was abroad). Then it stops suddenly and fine until the next time. Maybe it's nothing to do with gastroenterology. I'd like to find out what it is, I hope a new GP would be motivated to do that.

 

[UnXmas]

Are you still getting any other symptoms besides the pain?

I think you're right that A&E may not be helpful, as if it's known that your pain is chronic and has so far appeared apparently not to signal an immediate emergency, the A&E doctors may not view it as their area. It's certainly not the best place to look for a diagnosis. However, if the pain ever gets unbearable, there may be a point in going simply for pain relief.

That said, have you had tests done or been examined by a doctor while the pain is occurring? It might be that blood tests show something if taken during an episode that they may not do in between.

I would think a good gastroenterologist should be doing another colonoscopy and upper endoscopy, since you were diagnosed with IBD in the past.

 

[newfromscotland]

Sorry that the doctors couldn't help out. What is your current diet?

I tried giving up gluten and also dairy. That didn't change anything. At the moment just normal (not vegetarian, pretty much eat anything).

Are you still getting any other symptoms besides the pain?

Not really. I think I go to the loo more than before. Once or twice a week (I can't find a pattern) I feel sick in the morning for a few hours and sometimes throw up from that. Then it goes back to normal. Kind of tired but I associate that with the pain problem.

That said, have you had tests done or been examined by a doctor while the pain is occurring? It might be that blood tests show something if taken during an episode that they may not do in between.

No. I haven't had any blood tests at all though (since about 2 years ago, in the last one they said my white blood cell count was too low and to stop taking the pentasa, which I wasn't taking anyway as it just gives me a headache, then nothing since then). Don't know if there's anything particular to ask for (the thought of asking is a bit scary, I'm quite worried they'll think I'm neurotic about it all so I've only seen the GP 3 times over the whole 1.5 years).

I would think a good gastroenterologist should be doing another colonoscopy and upper endoscopy, since you were diagnosed with IBD in the past.

OK. I don't see the current ones doing this unless something changes.

 

[Lady Organic]

a MRE is not enough to exclude a CD diagnosis, you have to get a complete colonoscopy, especially you've been diagnosed in the past, are not taking any medication and are having symptoms. You need some proper monitoring. Im sorry you have to go through this. Dont be affraid you may appear like a neurotic. You are not. Push and explain how distressful this pain is for you and that you even stopped working. Push for a colonoscopy and proper blood monitoring with Sed rate and CRP check ups. Blood test cant exclude CD diagnosis, colonoscopy is your best bet. good luck.