Diagnosed but undiagnosed.

[Earthsoul]

I was diagnosed in my 20's with ulcerative colitis. All was fine for years. Then I had my son nearly 7 years ago. Since then I have struggled with vomiting and pain when I eat.
I have lost 30kg. I am having to have nasogastric feeding which has stopped the weight loss. I haven't gained anything though!
The doctors cannot find why I am vomiting and in pain.
I am going to see a doctor at St Marks, London.
I had to go off work because I was so malnourished. I face losing my job as I have been in hospital twice this year and had a bad UTI when I was supposed to travel and couldn't cause I was peering blood.
I am really down as I am getting nowhere fast. My symptoms are not improving. I am now having NG feeding at home.
I don't know what to do.
Does anyone out there understand how I feel? Is anyone else out there desperate for answers, desperate for someone to help?

 

[Chickadee]

Have the doctors looked for inflammation in other parts of your GI system? Perhaps what was diagnosed as UC is actually Crohn's and now affecting your stomach and/or small intestine. I'm sorry you're having so much trouble.

 

[Earthsoul]

They cannot find any inflammation. I have had test after test. I respond to steroids but I am refusing to take them because I want a definitive diagnosis.
My husband says just take a course of steroids to get a rest.
I just need a diagnosis.
My work need a diagnosis.

 

[Keralin]

I understand exactly how you feel! I'm currently going through the same thing. I was diagnosed with 'mild' Crohn's, not UC, but my symptoms are out of control (pain, nausea, vomiting, weight loss). They seem to think there's no way I can be feeling as badly as I am based on the clinical findings, so they're trying like mad to take away my diagnosis.

What a lot of doctors fail to realize is that everyone is different. Some of us feel pain differently than others, and some of our bodies completely freak out when homeostasis gets slightly out of balance (I felt anemic way before I was actually anemic in my lab results). I have ulcers in both small and large bowels, yet no signs of inflammatory changes on both CT and MRI. So just because you fall within a certain reference range, doesn't mean that it's right or normal for YOU.

Unfortunately, the best advice I have is to keep trucking. Don't ever give up on getting answers, and keep venting! Talking about stuff can help take the edge off. Hang in there!

 

[Earthsoul]

I am trying to hang in there
just frustrated that I cannot find why I am so ill!!!!!