Doctors are saying maybe Crohn's?

[delfina]

Hello everyone. I hope this post is not inappropriate or in the wrong place...

I have seen a couple of doctors now for GI problems and have been referred to a GI specialist, who will probably then schedule a colonoscopy. Lots of waiting ahead of me. In the meantime, both doctors said, "Maybe Crohn's." The only other thing they mentioned was colitis. Having never heard of the disease, I went ahead and googled and came across this forum.

First off, let me say that I have nothing but respect for everyone here. The humor and upbeat attitudes are just really amazing given the difficulty of the disease.

But here's my problem... the symptoms of Crohn's seem distinctly uncomfortable/painful/etc., more so than anything I have had, and I'm beginning to wonder WHY my doctor suggested that I might have it.

My symptoms are small amounts of red blood (and sometimes mucus) mixed into the stools. It's going on three months of that now. I do sometimes have BMs rather often in a day, maybe four/five times at worst, but nothing like what people are discussing here. I don't really have diarrhea or constipation (although sometimes it feels like I am constipated, despite having already gone three times that day... weird!). Normalish/small amounts, usually. I've had hardly any pain. I do feel really tired and sometimes weak, but that could also be in my head. Have lost about ten pounds.

So... I know that you can't get a diagnosis from the internet, and self-diagnosis is a terrible idea anyway, but I'm just curious about my doctors' reasoning. How did you first find out you had Crohn's? What was the initial flare-up like? Does it make sense for someone with this disease to have the blood and so on without (or before) the pain? To me, inflammation = pain first and foremost, though other things might follow.

(Of course, having said all that about internet diagnoses, I'm still curious if people have other thoughts about what might be wrong. I have no idea.)

Thank you to everyone who replies; I truly appreciate it, and I'm so amazed by the courage and humor here displayed in the face of Crohn's. Pretty inspiring for a forum that talks so much about poop.

 

[Crohn's 35]

Hi there and Welcome and yes you are in the right place!!! Many of us here are still not completely diagnosed with Crohn's or UC and other IBD but are here to get some insight as to where to go from here. The waiting game stinks if you are in some Countries like Canada, and others have a long waiting list.

My dx took over a year and had exasberating pains and lost of lot of weight but that was 18 years ago and tests are far more advanced with scopes and blood work. Having said that , I had a colonscopy on the 8th of Feb and said no change, same ulcerations no better no worse. Then I had been complaining of my left side from time to time but said it was probably IBS... then landed in the hospital on the 17th from minor pain but bleeding (red blood) coming out with mucous and I vomited and got dehydrated. Two days later my Gi was in the hospital doing Scopes and I ended up having a Sigmoid (shorter scope in large bowel) and he saw inflammation and took I biopsy. He says Colitis, and I am waiting for March the 8th for my test results of all the others because I was in the hospital for the appt I was supposed to have March 18th.... I am guess I hate the number 8 these days :eek2: .

No everyone is in pain, my sister has both Crohns in large and intestines and she had no pain and bled, I had pain and no bleeding ....up to now. Try not to stress out, and event though that is hard, wait and see what the GI and scope says ok? Treatment helps alot. **** luck, sorry I was winded here, just trying to help you understand ok? Keep us updated!!! :smile:

 

[InkyStinky]

Hi Delfina!

I'm sorry you're having GI troubles, whatever the cause of them may be.

My diagnosis with IBD was a long process - I was 8 when I had my first flare up and I was so sick I don't really remember how the diagnosis came about. There were so many test, but I think the colonoscopy/upper GI were the determinate ones.

After years of "classic" IBD - pain, cramping, diarrhea, etc - my most recent flare-up was different. It started out as bloating/gas every afternoon, then diarrhea/cramping just in the morning, then bleeding. At first I didn't even think it was an IBD flare because I didn't have the terrible pain I had for so many years.

My current GI said the only way to definitely tell if it was a flare or not was to do a colonoscopy with biopsies - and that showed my symptoms were from a Crohn's flare.

I'm glad you'll be seeing a GI soon! Whether it's IBD or not, GI problems seem to take a long time to diagnose. Good luck to you!

-------------------------------------------------------------
IBD since 1990 (currently diagnosed as Crohn’s)
Blood clots 12/2009 (DVT and bilateral PE)
Medicines:
Prednisone: 20mg/day (of please let me start tapering soon!)
6MP: 75mg/day
Trazodone: 100mg/night (because pred messes with my sleep)
Warfarin: 12.5mg/day (anticoagulant - because of blood clots)

Ethel: “So, is everything okey-dokey?” Lucy: “No, it’s inky-stinky” ~ from an old I Love Lucy episode.

 

[My Butt Hurts]

Hi Delfina,
You are certainly welcome here even without a diagnosis. Hopefully you can keep your symptoms away before they get too bad with some proper treatment.
Everyone's symptoms are different, so it is a hard one to diagnose sometimes.
When is your specialist appointment?
Good luck, and welcome!

 

[Fog Ducker]

Welcome Delfina,
Like everyone has said, pain isnt always present. I didnt have any real pain till I was real bad. So no pain doeant really rule out one thing or another. I hope for your sake you dont have Crohns but I hope they get you diagnosed real soon, the waiting game is sometimes the worst part.

 

[tamesis]

Welcome!

I hope that you can get some answers soon, i am currently awaiting some myself, and can really empathise with how hard the not knowing is. Try not to worry too much in the meantime about what it could/could not be, as stress can be a real factor, and just try to focus on things that make you feel better.

 

[Astra]

welcome Delfina
like everyone said, everyone is different, and diagnosis is hard, I personally have never had blood in stools but lots of pain for example
A scope is a great idea, hope you get sorted soon
and you'll get lots of laughs here and genuine help
good luck xx

 

[Nic]

Welcome! Sorry that you are doig the waiting game right now
I don't have the "normal" symptoms that are usually listed when you look up Crohn's. Like you I'm only in the bathroom 2-4 times a day tops and it's usually not D. The last couple days I've felt constipated even tho I've already gone 2 times each day! I had a small amount of blood in my stool in the begining, but none since. I don't have much pain luckily. My biggest symptoms are being tired, weak and just feeling generally sick.

So as you can see everyone is different! I hope that you find something out soon! Good Luck!!

 

[Nyx]

Welcome delfina! I didn't have any pain either when I was first diagnosed. I had blood and mucous in my stool, that got progressively worse, resulting in a trip to the ER and a blood tranfusion. I was also having fairly normal BMs but for the blood. I also lost about 40lbs in three months. Your symptoms sound very similar to what mine were. Glad you're being proactive and getting things looked at. I hope you don't have Crohn's, but if you do, we're here for you for any questions and support. Good luck!

 

[teeny5]

Welcome! The disease can be different from person to person. I was tired all the time and lost 40 pounds in all. I rarely go more than 5 times a day and never see blood. My GI has said IBD for sure but could be ulcerative colitis or Crohn's even though it looks like Crohn's in the colonoscopy pictures. Good luck on your upcoming tests. I had to go through a few myself.

 

[Jeff D.]

Welcome, as other have said the disease can differ from person to person. I had horrible constipation when I was diagnosed. It really takes a colonoscopy and endoscopy to check for Crohn's so they can look for inflammation and take biopsies. You're on the right track seeing a specialist and getting a colonoscopy. Good luck

 

[delfina]

Thank you, everyone, for your replies. It's amazing how much this disease can vary from person to person... it kind of drives home the futility of guessing about what's wrong.

My GI appointment is on March 11th, though I am seeing the GP again tomorrow for more tests.

In the meantime, I may just start participating here~ at first I was like, I'm a bit of a fraud, I don't have the pain or the really life-interfering-ish stomach problems... and that's still true, but I would like to be a part of a support network anyway. And of course my problems do seem big to me. I actually cried today because I was so tired. My other symptoms vary a lot, though there's still yellowy mucus, sometimes blood, and now undigested food in my BMs - fun!

Oh well, my puppy is laying on his back and pretending to swim, which is his way of asking for a walk. Will be around!

 

[farm]

It doesn't matter if you have Crohns, UC, or any IBD for that matter. If you're having tummy problems, you've found the right place.

 

[Mountaingem]

Glad you found us Delfina! I don't have alot of pain until things get out of control. I hope for your sake it isn't Crohn's but if it is we're here to help!