Doctor Says He Does Not Have Enough Evidence to Tell Me I have Crohn's

[Kate5171]

Hello All,

This is my first time posting in here but throughout my experiences I have read a ton of posts here that have been very helpful!

About a year ago I began having abdominal pain, bloating, gas and burps (often smelling of sulphur) diarrhea (to the point that I could not make it to the bathroom sometimes), mood swings and fatigue on regular days and severe abdominal pain (once to the point I had to go to the ER) during flare ups.

I was recently referred to a Gastroenterologist who automatically decided to do a Colonoscopy because my sibling has Crohn's.

I had an appointment today where I was supposed to get the results for the Colonoscopy but was a little bit disappointed and unsure upon leaving the doctor's office.

He said he wasn't really sure how to diagnose me. He said when he did the scope everything seemed fine until he hit the end of the small and beginning of the large intestine at which point he saw inflammation, tiny ulcers and red spots. He said we could take the route of treating me for Crohn's but that it would be a mild case and that he feels he has some but not strong enough evidence to point to Crohn's. He said he could also diagnose IBS though and basically gave me the choice it seemed like.

In posting this I guess I'm asking if anyone had the same experience. My sibling was told the same thing by the same doctor after his Colonoscopy until things started to get really bad and he is now on medication for Crohn's.

When I left we decided to see each other in 8 weeks to see how I'm doing and talk about any further flare ups and go from there meaning whether I would choose to be treated for IBS or Crohn's. I have decided to take those 8 weeks and eat healthy/exercise to see if I feel any better and I have already been doing so in the past week before my appointment and feel a lot better already.

I just don't really understand why he can't say for sure and I'm worried that if it is Crohn's and it starts to get worse that I will regret not being proactive about things in the first place. Any advice? I feel like I'm choosing IBS or Crohn's!!

Thanks in advance.

 

[DJW]

Hi and welcome.

Over the next 8 weeks I'd suggest keeping a food and symptom journal to see if there is a link.

Did the doctor investigate the upper GI tract?

Sending you my support.

 

[Kate5171]

I've recently also been to a Naturopath who has me on a diet plan and so I am tracking my food and symptoms and will show the doctor in 8 weeks. As far as I know he did not investigate the upper GI. It was a Colonoscopy that he did and there was no further conversation than the small and large intestine.

 

[Orchid]

You want the Crohn's diagnosis, it's better to be safe than sorry because you have an opportunity to stem the tide of a disease that could cause you even more agony in the future. Imagine what could happen if this these are the symptoms of a "mild" (I hate the term "mild" Crohn's Disease) case for you! The side effect list of a lot of CD drugs can look really scary, but it's only a list of possibilities, not guarantees. Many people go their whole lives on medication with only mild side effects - you just don't see them online because they have no reason to complain nine times out of ten!

 

[happy]

I am tagging DustyKat. She can explain better than I can what to ask your doctor to prove that you don't have Crohn's and why the 'wait and see approach' to diagnosis is not a wise decision.
Thanks in advance Dusty.

 

[Catherine]

I would ask for MRI. My daughter's Crohn's disease is now in area 20cm higher than a colonscopy can reach.

 

[krika]

MRI and/or pill cam, just to be safe. If it is CD and left untreathed, it can be much worse with time.

 

[krika]

MRI and/or pill cam, just to be safe. If it is CD and left untreathed, it can be much worse with time.

 

[LodgeLady]

Well after a painful nauseas weekend I'm back on Entocort, Pentasa and a pill cam will be forthcoming....

 

[Patricia56]

I strongly, strongly, strongly suggest you find another doctor if that's an option. I don't know of any reason for a doctor to tell you they found ulcerations in the terminal ileum and say that it is IBS. By definition IBS does NOT cause damage to the intestines. IBD does. It could be something besides IBD but I really don't think it could be IBS if there's ulcerations.

If you can't change doctors then you want to go with the CD diagnosis and do not wait 8 weeks to go back and tell him what you decided. You want to make that choice sooner not later because every day that you go with untreated CD is a day when your body is building scar tissue in response to the inflammation. Other bad things that could happen include fistulas and abscesses that are often asymptomatic until they are bad.

At the minimum you should have had an upper endoscopy and an MRE as additional investigations along with a full lab panel to look at your blood counts, metabolic measures and chemistry along with ESR and CrP.

 

[valleysangel92]

Hello there

I'm going to echo others, this is not just ibs, while ibs may not be fun, it is nothing like crohns or UC. I've had some discrepancies in my diagnosis myself in the past, since there were some bits of pathology that confused my doctors as they weren't ' crohns typical ' but I was investigated for crohns and ended up needing surgery last year. I'm now flaring again, and have officially got the IBD stamp.

I know it's hard and frustrating not getting straight answers. I personally think that they just simply dont know enough about crohns, and that's why some people don't get diagnosed as easy as others.

If you have ulcers, then there is inflammation, so there is probably crohns. I would let your doctor know that you want to be treated accordingly. Whatever he says, you do have signs of the condition, and to me, inflammation, ulcers and the symptoms you describe are enough to start a proper treatment plan. Don't be afraid to stand up to your doctor and tell them you want treatment. You deserve to be taken seriously and IBD is not something to be messed around with. I personally agree that saying any crohns is mild is rubbish, all crohns needs a proper treatment plan, it always has the potential to develop into severe disease and to cause serious complications, I'm not saying this to scare you, just to show you that you are right to be disappointed by your doctors attitude and that you have every right to stand up for yourself and keep fighting for better treatment.

 

[Axelfl3333]

Your doctor doesn't,t sound like a confidence builder I think I would be wanting a referral to someone else

 

[DustyKat]

Agree 110% with getting a second opinion on this Kate for the following reasons:

1. Whilst I fully agree with patients having input into their care it should not come down to the doctor having you pick which disease best fits you. :yfrown:

2. You have a sibling with Crohn’s.

3. The area identified by the doctor as being abnormal is the most common site for Crohn’s.

4. The extent of structural change is not consistent with IBS.

5. Further testing, in the form of imaging, should be done.

Failing a second opinion then I do think you need to make a follow up appointment sooner rather than later. The reason being, unless the doctor knows what phenotype you have then he can’t say with any degree of reliability that mild disease won’t result in complications developing. Let me explain by giving the example of my children:
I have two children with Crohn’s. My daughter was diagnosed first and when it came to my son he was diagnosed very quickly. He was given the diagnosis when scoped and based on the GI seeing some inflammation and couple of ulcers in the terminal ileum. The following day he had a CTE and that confirmed what the GI saw plus the extent of the disease. The biopsy results, although not indicative of Crohn’s due to a lack of granulomas, rated his disease as mild to very mild. It wasn’t possible to know how his disease would progress. He was commenced on treatment straight away but unfortunately for him his disease type is fistulising, so even with monitoring and treatment he developed complications within 3 weeks (micro perforation, fistula and abscess) but at least we were able to jump on them straight away. Of course this is just our story but what I wanted to highlight is the unpredictability of this disease.

Good luck and welcome aboard! :ghug:

Dusty. xxx

 

[Kate5171]

Hey All,

I wanted to post an update in case anyone reads this for advice in a situation that might relate to mine. What a summer it was! Thank goodness I'm a teacher and had time to figure everything out! I went back and looked at the responses I got to this thread and so appreciate them all!

I was in such denial when I posted this and I still feel some days like there can be no way I have Crohn's at all but I'm slowly admitting it to myself and taking the help of my Gastroenterologist who has turned out to be absolutely wonderful with me.

Shortly after posting this I had yet another flare for days on end until I finally got myself to the ER, had a follow-up with my gastro who started me on Prednisone and I started taking it a week later after going back and forth about whether or not I wanted to put this "terrible" medication into my body!! Yikes, that was one decision that was not easy.

After being on pred now for 6 weeks (first 4 weeks at 40mg, now tapered to 30mg and going down 5mg/week) I feel fantastic! I cannot even remember what it felt like to be sick and I am on top of the world! Yay! There are a few side effects (insomnia in beginning -not anymore, acne, heartburn - when I eat badly, fatigue) but I'm really glad that I've been able to beat the weight gain and moon face - so far! Pain in the right side is extremely minimal compared to before and diarrhea seems like it never existed . Woo hoo!

I am starting Imuran this Saturday and tapering from 50mg-150mg. It should have been Pentasa but my brother tried that route for me and ended up back on Prednisone a few months later because he flared pretty badly (his and my flares are COMPLETELY different). I have read about side effects of Imuran but I'm not scared at all because I am putting the trust in my doctor who has been nothing but amazing in the journey....after that one IBS/Crohn's dilemma.

I did end up having an Endoscopy as well and nothing but inflammation and ulcers were found....no H.Pylori etc. so the egg/sulphur burps cannot be explained still..I want this discussion to be re-opened and may make another thread as the ones I've looked at are no recent than 2012. If so many of us are experiencing this how is it not a symptom of Crohn's....I want an explanation!!


Anyway that is my update! Hope these words can find the eyes of someone who really needs them and that they are helpful for someone!!

Best of luck all!!

Kate

 

[DJW]

Thanks for the update Kate.