To Label Or Not To Label, That Is The Question.

[DustyKat]

I sometimes think labelling people, or more to the point not labelling them, is becoming a problem in itself. I fully appreciate that doctors would not wish to falsely label someone with CD and commence prescribing the required drugs to treat it but does it go too far...I don't know. Are people needlessly suffering because no one is prepared to put their hand up and say it looks like Crohns, it acts like Crohns, it's debilitating like Crohns therefore it must be Crohns. Perhaps they could start slowly, with the more inoffensive drugs and go from there.

I don't know if my son was lucky to be diagnosed by appearances alone or if this frequently happens. Maybe this is why I am asking myself this question. It is not uncommon for me to read of undiagnosed people that have far more convincing evidence and symptoms than my son ever has. His colonoscopy showed no granulomas and so was inconclusive. He required surgery last month and the path report concluded that there was no conclusive evidence of CD, again due to no granulomas being present. Of course everyone agrees it is Crohns BUT he doesn't have the clincher does he?

I wonder how many others don't have the clincher and so go on undiagnosed with the docs dancing around not wanting to pass judgement.

It goes without saying that this is a complex and individual disease and one not to be taken lightly but is there a tad too much erring to caution at the expense of the sufferer?

Sunday night musings...
Dusty. xxx

 

[StarGirrrrl]

I couldn't agree with you more!

To expand on my earlier statement, I was told by GI this week that if upcoming upper endoscopy found a few ulcers they would not diagnose CD as "anyone can have a few ulcers through stress etc". What I would like to know is does this Mr Anyone also have my internal and external symptoms?? :devil:

 

[bushydougie]

Dusty could you quickly train to be a GI and move to the UK?
If only there were more doctors who thought about these things and how they affect their patients.
I personally find not being "fully" diagnosed to be so hard. As you know I was off work for 8 months due to this illness and to not have an actually diagnosis to tell people about makes me wonder if other people think I'm making it up. It's tough.
I am lucky though that my GI has given me both pred and entocort without a proper diagnosis. It took some pushing for me but I know there are plenty of others who have not, yet, been as lucky as me.
Thanks for this post. You always manage to think of everyone

 

[Mister_Hotspur]

This is something ive been confused about recently too, i realise it must be very frustrating for those that are undiagnosed so please understand my opinion is exactly that and its not meant to upset anyone.

I think whats helped in Matt getting a diagnosis is the enterocutaneous fistula and the family history, the fistula indicates inflammation at some point.

We all know Crohns is complex, its impossible for us all to give advice over the internet because what terrible pain might be to one person coud be very minor to another, it all depends on personal pain tollorance. Its also worth remembering everyone has differing views on personal health, some people i know take two days off work for a common cold, some of my friends were wrapped up in cotton wool in case they caught something..my point is the doctors can only make a diagnosis based on what facts they have, although it might be somewhat of a lottery with regard to their experience. I still believe you have to put your trust in them, Doctors arent Gods but theyve spent considerable years and money getting to that position, if it was really as simple as checking 'netdoctor' and the like for tell-tale symptoms, youd have to question what they're being paid for.

Whilst im pleased there is becomming more awareness to Crohns (I smiled when it was mentioned in an episode of Entourage,lol) i think perhaps its the next thing to IBS, there are hundreds of Gastro intestinal problems the human body can face, but if its not IBS, it must be IBD..

In the UK, the NHS is currently under a lot of stress, due to the cuts everything has to be justified. I just wonder with the healthcare in the US being private, is it easier to get a diagnosis there? i.e, if you have an illness, you are making someone money.

Controversal? maybe. Another thing that confuses me is the use of Pred, is it overused? Its certainly a very powerful drug and im not enjoying being on it, my heart is beating so fast and i cant seem to sleep. The dose im on and others are on dont seem to be consistant with symptoms.

 

[DustyKat]

That is very true Dave, about Matt. I have absolutely no doubt his quick diagnosis was as a result of Sarah. He did however only have 1 week of very mild symptoms and a somewhat raised CRP. The GI stated over the phone that he was sure he had CD based on the CRP and thickening of the bowel wall as seen on an ultrasound. He confirmed his diagnosis by visualing one shallow ulcer in the terminal ileum. The fistula and abscess didn't rear it's head until a few weeks later.

I guess one of the things that made me think on this is what T is going through at the moment with her own children. I'm not saying what the docs will or won't find but there seems to be a hesitancy there in regard to her eldest son. In view of what Gabs has been through I would have thought they would jump on it pronto to either prove or disprove CD, not have T insist on the path that should be taken.

I hope you don't mind me speaking of this T. Let me know if you do and I will remove it.

Dusty. xxx

 

[Grumbletum]

Interesting thread, Dusty :thumleft: The longer I've been on this forum, the more I'm amazed at the many manifestations of IBD. And it seems that different docs, even countries, have different 'goalposts' or 'clinchers' as you say.
As a patient who doesn't display some of the more typical clinchers, I started with treatments for grumbling appendix and UTIs and Crohn's was first raised as a possibility when I was sent for an ultrasound looking for something else entirely.
The clincher for me was cobblestoning which showed up in a subsequent Barium FT. The GP who referred me for the ultrasound put me on a mild dose of Pred as I had a while to see the gastro and my symptoms were worsening. I can see why docs might be reluctant to prescribe some of the drugs ( why are they all so scary??!! ) before a definite conclusion has been reached, but I saw her the other day and we were discussing how much the Pred helped. It took 8 months before I was started on it and in that time I'm sure more damage was done to my bowel.
The other thing is that there is very little information forthcoming from docs on ways to cope with the disease, pre and post diagnosis. I mean, in our local surgery, hospital etc there are loads of leaflets on cancers, diabetes etc. but nothing at all on IBD. As there are steps you can take to help alleviate symptoms etc, it seems a shame that those who have or are suspected of having IBD might only be aware of them if they are lucky enough to stumble on a forum such as this one.

 

[StarGirrrrl]

my point is the doctors can only make a diagnosis based on what facts they have, although it might be somewhat of a lottery with regard to their experience. I still believe you have to put your trust in them, Doctors arent Gods but theyve spent considerable years and money getting to that position, if it was really as simple as checking 'netdoctor' and the like for tell-tale symptoms, youd have to question what they're being paid for.

I have no problem with your own opinion but sorry to say I have to disagree here. In 2007 I was diagnosed with IBS despite red flag symptoms and raised CRP, after one single normal test, a flexible sigmoidoscopy.

Now I am sicker than ever, and my new GI is content to ignore me passing blood, still raised CRP and other red flag symptoms, and even changed the result of a positive WBC scan so he could say it was IBS again (a result accepted for a year by 3 departments. A result he mentioned on the colonoscopy report. A result which was accepted 2 weeks before this decision when they discussed scanning me again!)

Now waiting for an upper endoscopy, as I put above, will not diagnose CD even if they find ulcers, as "anyone can have ulcers". Well, this Mr anyone does not have my symptom set!

I put my trust and faith in Drs and ignored my own instinct that something was very, very wrong. As a consequence I am still undiagnosed and have lost years of my life.

It is not something I will ever do again, and would encourage others to be constantly questioning tests/treatment/opinions. Don't blindly follow Drs like I did.

 

[Dexky]

I still say it's a matter of cost especially in govt funded hc situations. I have no doubt that docs are encouraged to delay dx due to costs of treatment. I've seen Joanie mention the "post code lottery" for treatment options several times. And she has a dx!! I may have a bit of conspiracy theory-itis but I can also imagine a scenario where insurance cos. influence doc decisions as well. It's the golden rule...those with the gold make the rules!

Meanwhile, pharma advertises their wares on the tube encouraging us to seek treatment for every conceivable ailment. We all have something, we just haven't seen it on the tube yet. I'm sure there's a pill out there that I need!

 

[DustyKat]

In our case Dex I don't think cost had anything to do with Sarah or Matt's diagnosis...

In Sarah's case I truly believe it was a case of Crohns not being on the radar for two very distinct reasons. Firstly I believe it was a lack exposure and therefore experience with the IBD, the doctors did not at any point have it on the radar. I also believe Sarah's age played a part in that as well. Secondly, Sarah did not present with the *classic* Crohns symptoms and so again it was never a consideration. Even when I realised this is what we were most likely dealing with and I told the doctors why and that I was not leaving the hospital until they could prove to me it wasn't they thought I was grasping at straws.

Matt of course is a different kettle of fish and they went into overdrive when I asked for inflammatory markers and they were returned raised...well you know the story! :lol:

Dusty. xxx

 

[StarGirrrrl]

Perhaps I could have put my comments better. We should put some trust in Drs due to their training and experience. But that is a 2 way street. They need to put their trust in us to know our own bodies and know when something is worse than what they are saying.

 

[DustyKat]

That is a very good point StarGirrrrl. :thumleft:

Dusty. xxx

 

[Dexky]

Sarah and Matt(especially Matt) had something going for them that few do...mama grizzly who speaks the language!! Matt may well have gone undxed w/o your advocacy Dusty. And I know you've asked yourself many times, if you knew then (with Sarah), what you know now! Her outcome probably would have been the same anyway since she didn't feel pain until it was so far along! You definitely can't beat yourself up for that!!

 

[Crohn's Mom]

I'm not sure it really matters whether we have free health insurance, or private, or we're so rich we can hire a doctor to work only on us and no one else.

We have always had excellent insurance. We had every test possible done on Gabrielle without a hesitation from the doctors. I have blood test results, pathology reports (positive for granulomas), scan results, and pictures showing inflammation and ulcers throughout her entire digestive tract, and still her doctor did everything she could to NOT LABEL her as having IBD. Why? Was it the "stigma" attached to the disease? What was she worried about? I
Looking back now I can't help but wonder, and I want to understand, but I just don't. Gabrielle wasn't diagnosed until 8 years after this. I suppose I am in part to blame since I was relatively ignorant to this disease. I had friends who had it and hey, they looked perfectly healthy to me and just took some medications now and then, and spent a little extra time in the bathroom; so no biggie right, we don't need (that) label. I could slap myself for being (that) person.
That's neither here nor there tho...
The bottom line is the doctor knew better. Or did she?

Interestingly I have chosen this very same doctor to test and diagnose my sons now. She knows, (or does she?) that she is being used. I am full on taking advantage of the fact that I personally know she feels terrible about what has happened to my daughter. So I will use her now to act quickly, spend our insurance company's money, and decide for myself when the tests results all come back where we will go next. She will not be their treating physician, she's used up her "guinea pig" quota in my house.
I hope hope and pray they don't find anything to "label" my boys with, but I will be the same "grizzly bear" momma that Dusty was with Sarah, and they will be proving to me that they DO NOT have CD before I go away and let them make me feel insignificant again.

**StarGirrrl ....don't give up sweetie....you'll get your answer someday. I just wish for your sake, it was sooner than later, no mater what the "diagnosis" is

 

[lola99]

This is an interesting post because it makes me question even more my diagnosis. I don't have all the crohn's symptoms. No dirrehea,never had bleeding, no granulomas, no ulcers, very clean colon besides inflammation. I've had abdominal cramping and swelling of my intestine that caused a partial blockage. I wasn't even really blocked up it was just horrible swelling that cause me severe pain i threw up a couple times and had to go to the er and stayed in the hospital three days on all kinds of antibotics. I had a ct scan and they told me they think its crohns. I had a colonscopy a few weeks later and my biopsies came back with just inflammation. So is inflammation enough to diagnose crohns? Who knows.