Feeling Nervous and Discouraged

[Lanz]

Just had a follow up with my GI this afternoon. I was diagnosed with lymphocytic colitis in June and put on Entocort. I have been on the Entocort for a month. Some improvement.. Last week I started to have chest pain and an abundance of other symptoms that have been on going. My PCP ran different autoimmune tests (lupus, thyroid, RA), but they all came back normal. My CBC was abnormal, showing that my white blood cell count is still elevated. This was elevated as well as my SED rate and C-Reactive Protein about a month and a half to two months ago. My GI is concerned that this is elevated and concerned that my symptoms have not subsided. He had originally told me he thought they would clear up quickly. Still have abdominal pain, loose stool, fatigue, low grade fevers, rashes, etc etc. I have to have an Upper GI follow through with barium in a week because he wants to take a look at my small intestine. I have only had a colonoscopy with biopsies, which resulted in the lymphocytic colitis diagnosis. I also had a CT scan and there were multiple enlarged mesenteric lymph nodes seen. I am just feel a bit discouraged today, a bit nervous about what they might see, and curious as to what is going on, is my diagnosis wrong? Blahh.. Just needed to vent.

 

[nogutsnoglory]

I can totally understand being nervous but you have to understand that I'm sure you're in good hands and that whatever they find they will be able to treat effectively. It's better to be in the know and be proactive than be in the dark and get worse.

 

[Lanz]

Thanks for your response. I agree 100% that it is better to be in the know, but being new to all of this, it is worrisome.

 

[Jennifer]

Keep us posted on the test results. Its a fairly simple test if you haven't had it done before. Drink barium, walk around and do x-rays. My last one took an hour to complete (mainly because my hospital carries the newer forum of barium which is easier to get down due to improvements in taste, texture and amount).

I don't know if your diagnosis is wrong or not yet hopefully you'll get answers and proper treatment soon. Have you been tested for Celiac disease? "There is an increased risk of Lymphocytic Colitis in persons with Celiac Disease and is estimated to be approximately 50 fold." http://www.crohnsforum.com/wiki/Lymphocytic-Colitis

 

[Lanz]

I have not had this test done before, this will be the first time. Not nervous about the test, more anticipation in having it done and getting the results. I have been tested for celiac and it was negative. I will keep you posted!

 

[Trysha]

Hi Lanz
It is a worrying time for you and it is something we all go through----nervous about them finding nothing or something. Been there --done that.
As the events unfold and treatment plans discussed with you then is the time you will feel better.
Don't let it get to you--you will feel better with diagnosis and treatment.
I agree with Jennifer's good advice.
Take care and feel better soon.
Hugs and best wishes
Trysha

 

[Lanz]

I appreciate all the support. It is helpful to know that other people have been through this and are going through this when it seems most of the people around you can't empathize and understand.

 

[Lanz]

Well... Just had the first set of pictures done. The barium wasn't as horrible as I imagined. The doctor said so far I. Regards to swallowing things look okay... Maybe a little reflux. No major issues noted yet. Now we wait for the second part and the small bowel follow through

 

[Lanz]

Just got home. The doctor said on first glance, that the small bowel follow through appeared normal, but he would have to go back and review all of the X-rays. Also said that this test can be difficult to diagnose something like Crohn's or UC unless it is 100% obvious. Not sure how to feel right now. Really upset and frustrated. I guess I just need to wait. But I am so sick and tired of feeling sick and tired everyday, of missing work, of spending so much time in the bathroom. I just want a definitive answer and I don't think this test is going to help me get one.

 

[MayaD]

Hi Lanz,

I realize this answer might be a bit late, but if you are still wondering what your diagnosis might be have a look at IBS or LGS. You might recognise some symptoms there.

There is a useful website "constantlyfeelingsick" dot com.

All the very best!
MayaD