Hi, how do I get my gastroenterologist to take my concerns seriously?I am a retired theatre nurse and I have concerns I have ischaemic colitis, yes,rare I know.
I have been attending appointments for over 2 years with severe abdominal pain after meals,nausea,fullness,bloating and appetite loss however my specialist is adamant it is IBS. I have had to alter my eating pattern to eat small snacks throughout the day as I cannot tolerate a full meal. My blood tests and scans are normal .But I have risk factors for this and my condition is worsening.
What can I do about this problem,it is getting me down.?.
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Windmill6
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It is frustrating when we feel we’re not listened to and not getting the help we feel we need.
Has the treatment for IBS and / or diet changes made any difference to your symptoms? That may have bearing on whether it is IBS or something else? Process of elimination may get them to re look / review?
What’s their view on testing you for ischaemic colitis?
Thank you for your very kind reply.I am going to ask ( very politely) for a 2nd opinion if he refuses point blank to listen to my concerns.
The problem being is chronic mesenteric ischemia is very difficult to diagnose, I believe it involves an abdominal angiogram which is expensive and not done at the local hospital. It is complicated because I have Conns disease ( adrenals)which he clearly doesn't understand. The complications from it are cardiovascular and low blood flow from the BP reducing medicines.
The IBS drugs ( I've tried 4 /5 different) don't seem to make much difference.
Or am I reading too much into this because of my theatre background??
nope not reading too much into it, and your well within rights to get second opinion especially if he’s not displaying an understanding- a good doctor will admit they can’t help, but still listens and then realises that you need someone else and / or someone more specialist (sounds like from your complex health issues you do).
Asking my first cardiologist for a second opinion (he wasn’t really listening or keeping an open mind on my CHDj and parting company with him (and him agreeing that would be best - probably glad to get rid of me 😂)) was the best thing that could have happened for me as that’s how I found my current cardiologist (see definition of a good doctor) as well as them referring me to a specialist cardiologist. Have had to travel a bit to see specialist as not in my hometown hospital.
Hi As this is a cardiac forum there might not be many with your perceived condition to offer advice... I don't know much about ischaemic colitis except that it can be caused by low blood pressure.
In your bio you say you have chron's disease... perhaps speaking to the doctor that normally deals with this side of things will help as the symptoms sound like a blockage (going on family members experience). Keep a symptom diary and present your information. If they won't test for the colitis, ask why and have them document in your notes. You can ask them for what their alternative diagnosis is as well and have them explain why.
If you are getting nowhere with your gastrologist and appear to have lost faith in their ability to diagnose your condition correctly especially since you believe it is worsening I suggest you ask for a second opinion, which is not a legal right but a request that should be respected if it has a reasonable basis. The alternative is to get a referral to a private medical gastrologist, but that may be expensive especially if tests are involved. I suggest it might also be worth talking things through with your GP who may be be able to offer other suggestions and might be able to add some professional support for you if you wish to find an alternative to your existing specialist.
Thank you for your very supportive reply. I am going to politly ask for a 2nd opinion if he refuses to consider the alternatives. Sadly my GP isn't that supportive on this matter.
That's the trouble with Dr's, they always protect each other ( Even if decision is wrong)...
I know IBS can be painful I'm not trying to trivialise it.
But, the different drugs don't help and neither did the diet particularly.
It seems everything and anything is giving me pain.
I have risk factors for ischaemic colitis (age,sex,past history)
If it isn't diagnosed correctly it is a fatal illness, because the blood supply to the bowel dies.
If they think it's IBS/IBD it is possible to test for it: ask them to do the test and if not, why not?!
I don't know much about it, other than my Dad had it, but can't help but be concerned that if it is ischaemic colitis, would you not have been desperately ill/dead by now?
Have you considered SIBO (Small Intestinal Bacterial Overgrowth)? It produces exactly what I understand your symptoms to be. It's just as hard to get most Drs to recognise that and properly treat it (long courses of antibiotics and often specialist ones are required) but it's worth considering.
If they don't take an ex-theatre nurse seriously, you can imagine the trouble the rest of us have!
1) Believe in yourself! Have an open mind to what they are saying so they feel you are listening to them, but if you think they are wrong, keep calm (easier said than done!) and say so! If they know you've heard them but don't agree they will be better than if they just think you're not listening. It's fine to say, "I do hear you, but I don't agree: please explain to me what you mean and be prepared to hear me to. It's my body, please discuss it with me!".
2) It's hard to keep emotions out of it when it's personal to you, but this is essential if they aren't to dismiss you. Try to imagine that you are taking your body in to see them as a sort of separate entity and be a one-step-removed advocate for it, rather than going in for yourself as a soul. Sounds weird, but works!
3) Ask questions. Questions are a powerful tool - it makes the other person stop to think about the answer and gives you "breathing space" to think.
4) Set out a concise list of up to 4 points that you want answered and write them down on a small piece of card and take them in with you.
Things like:
What do you think might be wrong?
What do you plan to do about it to help me?
How do you think this will address the problem? Why?
(What about "x" symptoms that you don't seem to have heard/understood?).
See that these are answered!
Take me with you in your head and know I'm rooting for you: you are not alone!
Remember: as you pay your taxes, they are in effect your employees. They have a duty of care and shouldn't be ripping off the NHS by taking a salary and not working properly for it: hold them to account!
If this really fails, you are always entitled to a second opinion.
I encountered a despicable cardiologist and asked for a second opinion. The guy I then saw was brilliant and the first one was prepared to lie in writing, to try to discredit me, he was so bad!
I had a problem earlier this year trying to get antibiotics to keep me going until I could speak to my proper gastroenterology team: I had an appointment booked but 10 days is a long time to wait with a bacterial infection and I just needed cover to survive to the appointment. You wouldn't think it needed to be so hard!
Some of the Drs are extreme narcissists and don't bat an eye at gaslighting you, so be prepared to be tough and remember they are not God, even if they think they are!
Thank you for your reply and taking the trouble to explain. It makes perfect sense now. I can understand your concerns too and the feeling of urgency to get this looked into. I have chronic pancreatitis and know it makes me more prone to acute attacks, just by the nature of the relationship between chronic and acute conditions.
Unfortunately there is no personality screening to be a Dr and some just do not have empathy or even basic understanding of how people tick.
In my experience, even without having met you, I would say that your background is likely to make you less worried about health issues and more pragmatic.
The thing that makes me grumble is that they always seem to come down on the side of doing less, not more, no matter what the excuse: if you had no experience they would blame that too and still dismiss you! It's only when you come across a good team, such as my GI team and the cardiologist I'm now under, that you can see the stark difference and it feels like a breath of fresh air!
I hope you can get your referral ASAP and they stop messing you about: I sense that time is of the essence.
To play devil's advocate; if you were OK and this was "only" health anxiety (which I'm not dismissing as it is a crippling condition itself), surely this too should be being taken seriously and the sooner the ischaemic colitis is ruled out, the better, so that it takes it out of the equation and is one less thing for you to worry about.
Having worked with people with health anxiety (which is basically what this Dr is leveling at you), the best cure for their "ailments" is to test and prove that they don't have it. They normally make a miraculous recovery and their pains and problems that were crippling them usually all resolve over the next couple of hours and they become fine again, such is the power of the mind.
However, as much as I wish a similar cure could be found for you, I think it is unlikely: in which case the best solution is elective corrective surgery before it becomes a disaster!
Remember: you are sensible, I'm sensible, I'm with you, as are others here, so he's out-numbered and you need to stand your ground to get the right answers.
If they are not just going to pack you off in a box the most cost effective way of sorting the problem is to do it in a timely fashion.
I am glad someone has highlighted the arrogance exhibited by some members of the medical fraternity when they deal with their primary customers, the general public. Whilst it is so much better than it used to be many years ago, and the majority of people in the medical profession are prepared to listen to your point of view, present their diagnosis and answer questions in an understandable way, and importantly treat those in front of them with dignity, there are still some medical staff who believe they are above all of that . Being intelligent and knowing your subject is only part of being a senior medical professional, interpersonal skills also count for much. Anyway whilst I am not particularly fazed by the aura of these individuals, and, when needed, can look after myself, it is saddening that there are many people who are not able to give as good as they get for whatever reason, and can suffer mentally or physically or both as a result, when confronted with medical arrogance.
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