I might have Crohn's disease. Very anxious about it, help appreciated!

[Solidsimpson]

Hello all,

I posted the other month about my symptoms. Basically diarrhea for 6 months with little amounts of blood. Originally thought to be mild IBS. Eventually I did a colonoscopy and there was very mild inflammation. Doctor told me not to worry about it and it should go away in a few months. 2 days later, biopsies came back showing some ill formed granulomas in the colon which point to Crohn's Disease. My GI said that it is a little weird, but he doesn't think it is CD still.

Got a 2nd opinion and that doctor agreed. Got a 3rd opinion and that doctor scared the lights out of me. He told me he thinks it could be Crohn's. I even told him i have a lot of health anxiety and to be gentle, but he proceeded to scare me with some stories. He told me it was as mild as it could be but I need to do something about it so it doesn't get worse.

I have now been in limbo about this. What is someone supposed to do with 2/3 doctors tell you one thing, and then another tells you the complete opposite?

I can't keep spending money and time on asking more doctors. Im exhausted. It is hard to function with all this anxiety about having this disease. Now all i do is google the disease and see horrible things.I was told that I can wait a few months and see if it goes away and it HAS been getting better, but I kinda think it is Crohn's. The scary doctor convinced me in a way. Maybe we only like to believe the bad stuff we hear and read?

Any thoughts on any of this? Any positive thoughts on Crohns? My anxiety symptoms are FAR worse then the possible Crohn's.

[half-empty]

didn't they test what they found??

[Solidsimpson]

Yes, they tested the biopsies. One of the biopsies showed granulomas which point to it most likely being Crohn's. However, it could also be from something infectious I had and thats what my doctor kinda thinks it is. Theres quite a few things about my problems that are not typical Crohns and I don't have any ulceration or anything like that in my Colon. Just very mild red inflammation in lower part of Colon.

This doctor has 30 years of experience so I would think he knows what he's talking about it but it all seems weird to me. This is why I am so anxious and in limbo.

[half-empty]

well you asked 3 and two had the same opinion so id go with that :)

[Solidsimpson]

I know I know. But I mean if you look up Granulomas online, it sounds like a Crohn's "sure thing". The 3rd doctor was just so surprised my other doctors didn't tell me it might be Crohn's. He was just so convincing about it...

[half-empty]

well I don't know what to say really, I thought crohn required treatment? one of my friends had has part for her bowels removed and shes great now. I know what your saying spending money if you don't need to but if it was me id want to make sure, I know with crohns you can have relapse periods and then it will eventually flare up again. maybe wait and see how you are in a couple of months and go from there.

[Solidsimpson]

Yes, my plan is to wait a few months. If it is very mild, a lot of doctors don't do medication (thats what my doctor said) but it is up for debate i think. There is really now way to know for sure at this point since my colonoscopy/upper endoscopy were just a month ago.

I could do another colonoscopy in a few months but idk. My symptoms I have had the past 6 months aren't horrible. If the disease never gets worse, then ill be at ease. It is just so uncertain and that gives me tons of anxiety.

[half-empty]

it does get worse, I thought could damage the bowel? after all it is a disease, if two other doctors say its not then try not to think about what the third doctor said. until you see how you are in 2 months or so

[Solidsimpson]

After talking to the doctors, they all said that it may not get any worse if it is Crohns. It is definitely possible though. That is the fear.

[Gary A]

To be honest, granulomas are quite a giveaway in Crohn's, but the first two doctors are monitoring to see if it does progress that way. Crohn's isn't nice, but treated properly it can be very manageable, and it generally has quite lengthy periods of remission, when symptoms ease off or disappear altogether.

Try not to panic. Monitor the symptoms, follow your doctors advice and see where you go. Stress will only make any existing inflammation worse.

[Solidsimpson]

To be honest, granulomas are quite a giveaway in Crohn's, but the first two doctors are monitoring to see if it does progress that way. Crohn's isn't nice, but treated properly it can be very manageable, and it generally has quite lengthy periods of remission, when symptoms ease off or disappear altogether.

Try not to panic. Monitor the symptoms, follow your doctors advice and see where you go. Stress will only make any existing inflammation worse.

I know... But I guess they are also found with infectious diseases which my doc says it sounds more like. It's all very scary though. Nothing was found anywhere near the small intestine either so that is a good sign...I think.

[Shazamataz]

I think it is different tor everyone and even if it is Crohn's it could not get any worse. I know of people with mild Crohn's who just have the odd bad day and everything is fine.

Please don't read up on horror stories. I DO have Crohn's and when I was first diagnoses I completely freaked myself out about the possibilities. I was diagnosed in 2009 and was quite ill at the time but only had one relapse since and currently in remission on medication so it's not all doom and gloom.

[Solidsimpson]

I think it is different tor everyone and even if it is Crohn's it could not get any worse. I know of people with mild Crohn's who just have the odd bad day and everything is fine.

Please don't read up on horror stories. I DO have Crohn's and when I was first diagnoses I completely freaked myself out about the possibilities. I was diagnosed in 2009 and was quite ill at the time but only had one relapse since and currently in remission on medication so it's not all doom and gloom.

Thanks! Im worried also because the medication sounds horrible. Everyone complains about the Pred steroid. What meds do you use? Was yours kinda severe when you were diagnosed? Did it get worse for this relapse or was it similar to original?

[Shazamataz]

Heya,

My Crohn's was 'moderate to severe' so I won't give you the gory details!

I've been on two long courses of prednisone and I wouldn't recommend it to anyone, that stuff make you crazy! But it was a necessary evil :(

I'm not on azathioprine which suppresses the overactive immune system. It seems to have worked well for me, though I've been quite ill with other things the past few months (which has lead to me having terrible anxiety) and I'm researching cutting the aza down as I keep getting infections and my body can't fight them :(

---------- Post added at 13:25 ---------- Previous post was at 13:24 ----------

Oh, but remember, even if you DO have it, sounds very mild and if you eat well and look after yourself it could stay mild and not bother you for years and years!

[Solidsimpson]

My friend is on AZA and he really likes it! We all get infections, maybe the AZA is only attributed to some of them?

Great to hear yours hasn't really effected your life. Medicine is greatly improved over last 20 years it seems. My granulomas were "ill formed" and not anywhere near small intestine so I am wondering if maybe the lab mis-interpreted it. I really need to get a hold of myself. At least the colonoscopy was a great experience!

[lisab1]

its the not knowing thats hard isnt it!!
im due for a Colonoscopy due to a few issues.
I dont know if my probs are due to contact dermatitis or Perianal Crohns,
Crohns runs in my family, its so frustrating when the consultants
and GPs dont know!! Google will make us poorly for sure,
worried myself stupid. Hope you get some answers soon,
Love Lisa xx

[Solidsimpson]

Yes, it does suck because repeating colonoscopies over and over isn't ideal!

Just an FYI in case you are worried about the procedure at all, you shouldn't be! I was very cared about prep and the scope but it was a very easy experience.