• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Undiagnosed and Frustrated

Hi all,

I've been lurking around here for awhile now, but need a chance to vent a little and get some support from other folks who understand!

Just about a year ago, I had an "attack" of severe lower right abdominal pain. I went in to the urgent care clinic, where the doctor I saw thought it might have been appendicitis. A few x-rays and a CT scan later, they sent me home saying it wasn't appendicitis, probably just constipation, and to wait it out. The pain did get less on its own (CT contrast fluid caused everything to "flush out" of my digestive system which helped initially) and reduced to a tolerable level, but I continued to have varying types of pain all in my lower right abdomen (and still do to this day). Also after the event, my BMs (which has always been normal) changed (mucusy, having many smaller movements, often the stools looked rolled up or creased (like they had been flat at some point)) and I started having difficulty going. Kind of like constipation, but the BMs are not hard and dry, as I would normally think of const. They are more oily-looking. (sorry for tmi)

At the time, I had just started a temporary 4-month work assignment, so during the week I was living 2.5 hours away from home with a strict schedule and not much of an opportunity to follow up on the issue. I did get my gallbladder checked out, but no sign of inflammation there either. Also I was about 2 months away from my wedding, and didn't want to end up with something really awful (like a cancer diagnosis!) right before my wedding. So I ultimately put off further investigation until January.

Come the next year (with amped up insurance) I finally go to a GI specialist in my town. He takes ONE look at me and says "IBS". (Ok, maybe I'm exaggerating, but based on my age, gender, and lack of diarrhea, he didn't even want to run any tests other than a blood test, which showed nothing abnormal). He told me to go away and come back in six months. I made it three before I went back due to continued pain. He basically said he still thought it was only IBS, but would do a colonoscopy and upper endo if "it would make me feel better." After that, I found a new GI doctor.

Go to new GI doctor, he says he thinks it might be Crohns. So I just had a colonoscopy this last Wednesday. No inflammation visually, although they couldn't get into the small bowel at all - they took some biopsies and won't get results for 10 days. Doctor will probably want to do a capsule endoscopy after results are in.

I'm frustrated though, as I'm still having pain, and the colonoscopy was really not a great experience for me - I had some severe pain that woke me up during the procedure. Asked the nurses why I had such pain, and they had no idea. They couldn't even tell me what they were doing at the time I had the bad pain, which is probably the most frustrating part. So now I just feel like all that pain was for *nothing* - maybe it is just IBS and I'm just a crazy person obsessing over it, but I still had the abdominal pain even when I was EMPTY following the colon prep... doesn't seem like IBS should cause that. :(

My husband and I want to start a family in the somewhat near future, but until I know what is going on with me and can get it under control, that possibility is out. And it sure isn't helping our relationship that I am so tired and crabby ALL the time!

Sorry for the long story... Just needed an outlet to vent to some folks who can really empathize.
 

DJW

Forum Monitor
First off - hi and welcome.

I'm sorry your going through this. I can understand the frustration.

Have you considered a food and symptom journal? It may help pinpoint possible foofd triggers. Its also something to take to your appointments.

There's a few things you can try that may help with pain.

Go on a low residue diet. Cut out fiber.
Some common problem foods include dairy and wheat/gluten. Hopefully you can at least get the pain under control.

Hope you start feeling better soon. Sending you my support.
 
I had a 6 year diagnosis battle. My old GI said it was IBS. In 2010 my current GI changed my diagnosis to Crohn's. I was told by an ER doc, who first told me he thought it was Crohn's, that IBS is what they will call your abdominal issues when they have no idea what it really is. They do that because IBS is the most likely candidate. But as we know they can be wrong.


I am sorry to hear about you going through all this. Just know that you are not alone.
 
I'm currently in the exact same situation as you. Everytime i go they say once again that it's IBS without actually testing me for anything and give me yet another set of drugs that do nothing. It's now the fatigue, feeling run down and my sore joints that's bothering me the most recently. I feel like I have no energy left. Definitely be strong and keep going back! I'm new to this and it's good to have a rant to people who understand :p

I hope you feel better and good luck :)
 
I feel you. Especially on the crazy person part. That's how I feel a lot of the time!

IBS isn't a disease, it's a grey area of symptoms, which crohn's or UC could be causing. Often doctors use IBS as a diagnosis when they either can't find anything else or can't be bothered to investigate.

As for the food diary/changing diet - I personally haven't changed anything significantly whilst I am in the midst of being diagnosed. I do avoid certain things, but try to keep things normalish because I'm scared I'll somehow temporarily improve the symptoms and my GI won't be able to find anything when he performs tests. Probably being paranoid...
 
Top