Where to go from here.

[Newbie66]

I've had stomach discomfort/pain for many years. Low red blood count, bouts with hair loss, low iron anemia. I'm a 45 year old female. My doctor informed me last week after a capsule endoscopy that I have multiple ulcers within the small intestine (illeum). He sent me to a pulmanery doc because I do experience bouts of breathlessness periodically. How do I advocate for myself? I mean, are there questions I should be asking or any advice you all could give me.

 

[Newbie66]

By the way, my pain has always always been lower left abdominal. I've just become somewhat accustomed to it because it's just always there. Actually, I've told myself it must be nerve pain because I received no answers for so long. I had to make one up myself...lol.

 

[Crohn's 35]

Welcome Newbie66! I am surprised you say your pains are on the left and diagnosed with the Ileum being affected. It is usually on the right lower quad. When I first had symptoms it was in the middle above the belly button. Are you seeing a Gi? If not that is the kind you need to see. Not usre about the losing your breath part though.

I would see a Gi and get a colonoscopy or small bowel follow through for a definate diagnosis. Ignoring it wont make it go away. Let us know what avenue you take. Good luck and glad you are here!

 

[Newbie66]

I started with the lower left abdominal pain at least 5 years ago, probably more. At the time, I went to a Gastro, had a colonoscopy and an upper endoscopy for reflux symptoms. There was a tiny area of inflammation in the large intestine near to the small intestine. Biopsy was inconclusive. I just continued on with this annoying pain. Was having serious marital problems so it wasn't my main concern. Went back a few months ago and had another colonoscopy/upper endoscopy. Aside from a polyp (benign) and a very small ulcer, nothing was found. My GI then had me do the capsule endoscopy which came back last week with the multiple ulcers showing in the illeum portion of the small intestine. Now, throughout the last few years I've had bouts with considerable hair loss. Luckily, I'm Irish and had a lot of hair to begin with!! My bloodwork sometimes comes back as low iron, anemic. My GI is surprised that the pain is lower left abdomen as well but, that has never changed and always been constant. Exercise helps it subside a wee bit.

 

[Jessi]

Hi Newbie and welcome to the forum. I hope you're able to find comfort and support here with this group. :hug:

We have a lot of people here that are undiagnosed and trying to get answers, just like you. They may have advice for you to get you on the right track. Check out the Undiagnosed Club here. http://www.crohnsforum.com/forumdisplay.php?f=75

I'm glad you joined us, and I hope you feel better very soon.

 

[xJillx]

Hi and welcome! Our stories have similarities. I have had some inflammation in the TI and rectum with small ulcers, but biopsies haven't determined Crohn's. My first GI was confident it was Crohn's and started me on meds. But since all recent tests have been mostly clear with negative biopsies, my current GI retracted my diagnosis.

Unfortunately, there is no test to easily determine CD. It seems like some of us just have to play the waiting game until there is enough evidence to support a diagnosis.

As Jessi suggested, feel free to visit the Undiagnosed club. We are all in the same boat. But, hopefully, you'll get some answers soon!