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Crohn's Disease Forum

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Hello everyone! I recently stumbled across this forum and thought I would post my story and see if this sounds like Crohn's.

For as long as I can remember, I have been suffering from severe abdominal pain. I was told 'oh you are lactose intolerant' and 'Oh, it's just IBS' but was never referred to a gastroenterologist.

I went a good year or so feeling relatively normal. About a year and a half ago I started getting ill again. I have diarrhea daily, especially since I had my gall bladder removed last November. I can count on one hand the amount of normal stools I have had in the past year. I also have gas daily as well...I basically never feel good.

About once a week I will have an extremely severe attack. The pain is always down low. The cramping is so severe that I double over. I shake, sweat, cry..it is unbearable. I always have diarrhea with these attacks too...but I never pass blood. I am quite nauseous afterwards and my lower abdomen is very soar, esp to the touch. I will have stomach aches everytime I eat for the next few days as well. I get quite a few ulcers in my mouth, usually on my inner lip. They come and go and are not excruciatingly painful.

I finally saw a GI doctor and had a colonoscopy, stool test, and blood test 2 weeks ago. He did not say much afterwards except I had nodules on my ileum, but to make a follow up appt with him.. He did take biopsies of these nodules. For a week after my colonoscopy I was MISERABLE...very, very sick.

The tech from his office called to tell me the biopsy was 'negative'. When I asked negative for what, she did not know, LOL. What ARE nodules anyway?

My follow up appt. is Monday. I do not lose weight, do most people with Crohn's? Granted, I was on an anti depressant that did cause me to GAIN weight.

I did not suspect Crohn's until he mentioned my ileum. Do other gastrointestinal disorders cause ileal problems?

Thanks so much for reading!
 
Welcome to the forums...I'm fairly new on these boards...but everyone here has been a great help so far!

now...I'm not a doc...so don't take what I say to heart...

but...listening to your symptoms reminds me SO MUCH of myself when I was younger...before I knew I had Crohn's. I never have had any blood in my stool...ever. Just horrible horrible cramps...and LOTS of the big D...not everyone's symptoms are the same, actually...very rarely is the disease identical in 2 people...

I finally found a doc that would take what I was saying seriously, and did everything he could to get me a proper diagnosis. But that was after years of messing around with docs that had not a clue.

Keep pressuring your doc...and if they are unresponsive, or seem like they have NO clue...find another one...something is definitely not good...and nodules doesn't seem like the only reason for your pain...just a suspicion on my part.

you NEED to see someone...if it continues, go to the ER...keep bothering the docs, and they will get you some sort of answer.

I sincerely hope you can get an answer as to what is happening :)
 
yup yup, keep harrassing your doctor for answers! they're there to serve you:)

there are plenty of disease that have many similarities to Crohns, and often the diagnosis can take a long time to work out which one it is.

a lot have very similar treatment's, and dietry requirements, and medications. and often it can take the sufferer a god amount of time to work out what works for them.

keep us up to date on how things go, and remember that although this is called crohnsforums.com , we'll take in any one with stomach problems, and there family and friends are always welcome to join as well to have a look around and see what your going through.

welcome
Jed
 
Thank you for the warm welcomes!

This is the first time I have ever seen a GI doctor and he seems to be very thorough! He just has not mentioned anything about what it could possibly be. He did say if the stool test, blood test, and colonoscopy came back normal we would proceed with a CT scan. He also scheduled my colonoscopy 3 days after my first appt.

I have seen doctors before who weren't even willing to do stool samples! So my GI doc seems to really want to figure it out as well.

Too bad he doesn't have much of a personality...LOL.
 
nixietink said:
Too bad he doesn't have much of a personality...LOL.

ha!

my surgeon never laughs, havent even seem him smile! he is a really nice person, but he never does those two things. you've no idea how hard me and my family have tried to get him to do either:D
 
Your GI does sound pretty thorough!! I guess you're kind of just playing a waiting game now...waiting for tests, etc...hopefully they come out with an answer...no matter what it is! Horrible when you can't do a whole lot about it because you don't know what 'it' is.

How are you feeling now??? More of the same, still?
 
daisy_dueller said:
Your GI does sound pretty thorough!! I guess you're kind of just playing a waiting game now...waiting for tests, etc...hopefully they come out with an answer...no matter what it is! Horrible when you can't do a whole lot about it because you don't know what 'it' is.

How are you feeling now??? More of the same, still?

Today is the first day I feel good in quite awhile! I started out the day with a stomach problems but it went away. I'm surprised.

I had my colonoscopy on the 20th and had a TERRIBLE recovery. Is that normal? I was out for almost a week...horrible stomach aches, bloody diarrhea, rushing to the bathroom constantly to only pass 'colonoscopy residue' as my Dr. called it, the urge to go and not be able to, shaking, sweating...just soo terrible. It was CONSTANT and I had a lot of trouble dealing with it. Then I became extremely constipated. Yesterday was the first day I felt normal...well, for me anyways, LOL.
 
Well...I'm glad youre feeling a bit more normal...I live for those days :)

As for the recovery from the colonoscopy...I'm afraid I'm not going to be a great help there...I've been lucky enough to never have one...yet.

I've also not ever had blood in my stool, so I can't offer advice on that either...only my sympathy. :)

I hope that the tests show SOMETHING...anything at this point.
 
Welcome to here! I wish you luck...your story sounds much too familiar. Only different thing is that I have had the bleeding when I get the same attacks.

I agree with Jed, don't stop fighting them. If you read my post a few back in this subject area, I have been fighting for just over 3 years now! Seen 5 specialists (and every one of them in this province), all of which have given up.

Not trying to preach, but are they only testing for Crohn's? I suggest being checked for Celiac, as well....has all the symptoms you mentioned, minus the bleeding (i would know!)
 
nixietink said:
Thanks so much for reading!

My colonoscopy was performed in a hospital. You can go to medical records dept in the hospital during business hours without an appointment and request a copy of your pathology report. Wait ten minutes if they are not busy...30 minutes or so if they are. It's only about two pages and lists out each biopsy taken and the pathologists findings for each. On mine it says things like "no dysplasia" (negative for pre-cancer = good ) next to every biopsy but it also says things like "multi-nucleated giant cells" and a few other curiosities indicative of illness. On the healthier parts of the colon it listed all the things they didn't find.
 
nixietink said:
I had my colonoscopy on the 20th and had a TERRIBLE recovery. Is that normal?

I don't think it is for healthy people getting routine polyp screenings.

Before my colonoscopy I was basically asymptomatic for Crohn's. The reason they did a colonoscopy is because a CT scan showed a big ole mass in my belly that they thought looked like cancer, and my symptoms of fatigue and numbness and tingling were symptomatic of cancer as well.

The colonoscopy gave me my first flare of gastro symptoms and it lasted weeks. I know one other person in real life with Crohn's and he says colonoscopies make him flare real bad also.
 
Hi Nixietink,

Good to see you found us!

Hope you get some answers very soon in relation to a reason for how you are feeling. It certainly took many of us some time to get a proper diagnosis and treatment so you arent on your own thats for sure.

On the weight aspect I am overweight so even though many think of crohns folk as underweight it isnt always the rule. I also pile on alot of weight when on steroids and have fun trying to get it back off again once things have settled!

2 out of my last 3 scopes have been painful and wiped me out post them too. One doctor even put in my notes about IBS symptoms being exaggerated when they put the air in as my gut went into spasm really badly. That was when they decided I had both Crohns and IBS lol Greedy aint I? ;-)

Anyway, keep us posted on how you get on. We will always listen even if we dont have all the answers!

Thinking of you and looking forward to hearing more about how you are getting on.

((hugs))
 

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