Is this crohns?

[norky90]

Hi,
For the past few years I have had a mixture of either diarrhoea or constipation.Each time I'm on the toilet for hours throughout the day to the point were it is just mucus.at this point my Dr was treating me for IBS. For the past few months I have mainly constipation, with a lot of stomach cramps as pain which is worse after eating and bowel movements am also getting a lot of pain in my Lower sides mainly the right just above the groin area.
This time the Dr found a fistula so he sent me to see a colon rectal specialist who ordered a sigmoidoscopy, During which he took a number of biopsies.
After seeing him on Friday he says it looks like crohns but would like more test done as he's not 100% sure.He mentioned I don't look like someone who has crohns.
I would just like some advice really as to what go look out for to seeIif it is crohns as I'm now waiting on a hospital appointment .This can take a long time and he wouldn't give me any med as he wasn't sure.
I also have occasional bleeding sometimes bright red but mostly dark I also notice since being like this i have a lot of joint pain and constant tiredness. Finally I have also noticed when I'm really bad I can't wee and pass semen like fluid..sorry this is a bit long but would really appreciate some advice Thank you.

 

[valleysangel92]

Hello and welcome to the forum
This sounds like crohns is a definite possibility, of course we can't tell you 100% and there are other possibilities but the symptoms you describe and the presence of a fistula certainly sound like crohns in my personal (non medical) opinion.

I'm not really sure what your specialist meant by saying you don't look like someone with crohns. It's a common thing for people with IBD to look perfectly fine from the ourside as the majority of the damage is internal. Part of the reason that people with crohns find it hard to get diagnosed and be taken seriously is that the majority of us don't 'look sick ' and look just like everyone else.

Do you know what tests you are waiting for? Generally speaking it's good to have a colonoscopy (like a sigmoidoscopy but goes further into the colon) and an MRI scan. The MRI allows doctors to see the entire intestine, which can't be achieved with scopes alone.

Did you see a surgeon or a medical specialist? It is usually gastroenterologists that diagnose and treat crohns disease, so if you are currently seeing a surgeon it may be worth asking to see a gi after you've had your tests done.

 

[norky90]

Hi Thank you for replying
He was definitely a surgeon. He wants me to go and see a gastroenterologist and he just said a few other test. Not sure what he meant over not looking like someone with crohns though

 

[DEmberton]

In my case by the time I saw the surgeon I was very thin and quite anaemic (after a blood transfusion everybody said I looked much better), so maybe that's what he meant.

With the urine it sounds like you're getting dehydrated, which won't do you any good.

 

[UnXmas]

They can't treat you for Crohn's until the diagnosis is confirmed - a lot of the medications can have serious side effects, so doctors need to be able to weigh up the relative risks and benefits for you, which requires a diagnosis and knowledge about the extent and severity of the disease.

As for not looking like you have Crohn's, it depends what the doctor was referring to. While weight loss is one symptom that is used to distinguish Crohn's from IBS and is one of the few visible symptoms that can occur with Crohn's, it's not present in every Crohn's patient by any means. Is it possible he was referring to your test results? E.g. if your blood tests show no signs of inflammation, perhaps you don't appear like a textbook case of Crohn's? But if your biopsies and scope results look like Crohn's to him, they should be the more important factors.

I wouldn't worry too much. Your symptoms and test results seem to be pointing towards Crohn's, and since you'll be seeing a gastroenterologist and having more tests to assess other areas of your digestive system, it shouldn't be too long before your diagnosis is confirmed or another diagnosis made, and you'll be started on treatment. No doctor is going to ignore test results just because you don't present the typical appearance of a condition. Usually doctors don't like to commit themselves until they're 100% certain of a diagnosis.

You also can't work out your diagnosis from your symptoms - if it is Crohn's, you'll only get your diagnosis through test results. As long as your doctors keep on top of things and get your tests done, don't worry about the diagnosis. The NHS usually involves waiting a few weeks for non-urgent tests and appointments. It takes a while but you will get them. Having a good GP who will chase up appointments for you can be very useful too.

 

[norky90]

Thanks for the reply's ...... I did tell him about the stiff join pain also that am never hungry and the fatigue and that's when he said about the not really looking like someone who as crohn's. That another thing even though am not really eating a haven't lost weight even though a few people say i look like i have. At first I was told it colitis and possible ulcerated but know he saying its not

 

[UnXmas]

Once you get some more tests done you should have a clearer answer. Sometimes it can be hard to distinguish Crohn's from UC or other causes of bowel inflammation, but if you've not yet had a colonoscopy or upper endoscopy, it may well be that you will get a definite diagnosis once these (or maybe some other) tests are done, so don't worry about the doctor's vagueness prematurely. Also, you may find when you see a gastroenterologist, you'll get clearer answers. Different doctors have different ways of communicating with patients; if the one you've seen so far isn't very good at it, you may have more luck with another. A doctor who's a poor communicator can still be a very good doctor though. It may help to write down questions you have before an appointment, e.g. "what makes you unsure this is definitely Crohn's?", so you can make sure you get across to the doctor everything you want to, though at this stage you may still be told you just need to have more tests done first.

If, after thorough testing, there is still no clear diagnosis, what they've found already should be enough to try treatment regardless: I'm assuming they found inflammation as they're suspecting Crohn's. It's harder to find effective treatment when the type of inflammation is unclear, but you will still get help. But it's too soon to worry about this possibility yet.

One other thing: have you discussed the urinary symptoms you mentioned with a doctor? Crohn's can interfere with the urinary system, but it's not that common, so I would definitely bring that up with the next doctor you see if you haven't already.

 

[norky90]

I have told my own gb about and he said it was part of the IBS. When this happens it's always around the time you have that feeling as if someone is sticking a big pole up your bum

 

[UnXmas]

I have told my own gb about and he said it was part of the IBS. When this happens it's always around the time you have that feeling as if someone is sticking a big pole up your bum

Not being able to pee properly shouldn't be considered part of IBS, especially now it's turned out you don't have IBS after all. Can you see another GP? Or bring it up with the gastroenterologist, he/she should be able to tell you if it's connected with the bowel problems (which it probably is in some manner, coincidences are rare, but it could be something like a urinary infection, which can be easily treated).

 

[norky90]

When I see the gastroenterologist I will ask about it then. It only really happens when am bad and having all day toilet day and when it feels like something is stuck up your bum

 

[norky90]

Had my colonoscopy today and they told me it is crohns so just got to wait for another appointment and fi d out the results of my blood test and other test

 

[buttER]

I had a gastroenterologist who said I did not look like a typical IBD patient so I did not have IBD.

I am thinking of starting a thread: "What do you look like?"

I am glad the colonoscopy gave some answers, hopefully that means you are on your way to a treatment that will help. Good luck.

 

[norky90]

I know didn't really understand what he ment when he said that to me. I got a letter in the post today saying my next appointment is now July so am hoping this was sent out before my results and they see me earlier as that's a long time to leave me with out sorting it

 

[buttER]

Dear norky90

July?!!! That is way too long to wait. Be insistent, if the Dr told you you have Crohns then you should be given treatment quickly to stop the inflammation.
Look up "nice pathway crohn's" for the nice guidance for patients:

"When your Crohn's disease is active, drug treatment is usually used to manage the symptoms quickly"

4 months to wait does not seem right, that is certainly not "quickly".

Or look for another gastroenterologist who can see you quicker.

 

[DEmberton]

4 months is quick for the NHS.:shifty:

 

[norky90]

I had a appointment a few days before the colonoscopy so am hoping it's a just a follow up to that but if I don't hear anything back in a couple of weeks am going to ring up and find out