Fed Up and Feeling Alone

[hannahig]

I just found this forum while searching the web for answers. Maybe I can get some here.

My story began two years ago, during my freshman year of college. I started having horrible diarrhea, and thought that is was probably my diet, so I cut out dairy.

Eventually, things got bad enough that I needed to take medical leave and saw a GI doctor. They did an array of tests, declaring that I had IBS. I had a colonoscopy (came back clean), and tests for my liver, kidneys, pancreas, ovaries, uterus, gallbladder, heart, and stomach. Everything came back normal.

Fast forward to this past December. Things got much, much worse. I lost 30 pounds in two months without trying, and my diet became severely restricted. I can no longer eat fruits, vegetables (esp lettuce and tomato), dairy, or red meat.

I have been hospitalized 5 times for abdominal pain, once while also vomiting blood. Each time, I have been sent home with a narcotic prescription and told they did not know what was wrong. The last time I went to the ER, I told them I had Crohn's. Never once did I get a disagreement. I even had an xray tech say "oh yeah, that's definitely Crohn's" when looking at my abdominal xray.

I have seen an allergist (for food allergies), had blood work done for inflammatory markers (came back negative), have had an endoscopy, a barium swallow, and a gastric emptying study. All came back normal.

At this point I don't know what to do anymore. I want another colonoscopy (last one was Oct '11), but my GI won't give me one. I have been referred to see a specialist at UNC Chapel Hill.

I am so frustrated and don't know what to do anymore.

 

[nogutsnoglory]

Have you looked into another gastro? Have you looked into the Prometheus test to diagnose crohns?

 

[hannahig]

Have you looked into another gastro? Have you looked into the Prometheus test to diagnose crohns?

I haven't looked into another gastro besides the specialist (who is technically a GI specialist). I believe that I had the Prometheus test?

 

[ProspectorsQuartet]

It's going to be a long rocky road. It is for everyone pre-diagnosis. But stand firm, and don't take no for an answer. There are many GI's out there. There is a doctor posting forum as well ( http://www.crohnsforum.com/doctor/ ), so check it out if you feel you need a better GI.

Also check with a nutritionist. Sometimes we take for granted how hard it is to change to a diet that would offer more relief. Try to work on a diary and meal plan even to the level of the nutritionist giving you a cooking list/schedule and grocery list/schedule.

Make sure to try everything. Don't let doctors talk you out of treatments you deserve a chance at trying. Until you are on biologics injections and you've had surgeries, you technically have plently of room to go as far as meds and other options so keep pushing.

Peace.

 

[dannysmom]

I also recommend trying a new GI doctor. And even if they are not certain of your diagnosis, it would be good if you can try different treatments - rather than just pain meds. My son was given lots of treatments to try (none helped) - but we appreciated trying them. Have you had MRE or CT imaging?

 

[UnXmas]

I definitely second the idea of seeing a different doctor. If necessary (and if it's possible) keep seeing different doctors until you find one who you are happy with and who takes you seriously. If you're not certain it's a gastroenterological problem, you may need to seek specialists from various different areas.

Don't get too hung up on getting a diagnosis. It may take time, and there may be a lot of negative frustrating tests along the way, as well as a lot of doctors who just don't understand. Don't take it personally. They can only go by test results, and some doctors don't seem to get that just because your tests are normal, it does not mean you feel well at all.

Also see if you can find doctors who will help with symptom management now, rather than waiting until you have a diagnosis, which some doctors seem to do. When the diagnostic process goes on a long time, it's simply not realistic to wait for definite answers before beginning to try treatments.

Do you have a copy of the X-ray that they said showed Crohn's? By the way, just out of curiosity, why did you tell them you have Crohn's?

 

[gatheringroses]

I am sorry to hear you're having a rough time. I agree with everyone else when they say to get another doctor.
Have you considered Celiac/been tested for it? Even if your test came back negative (blood), have you had a biopsy of your small intestine? Otherwise, you could maybe have a severe gluten allergy that has not shown up on tests. I'd recommend cutting out gluten for two weeks, and seeing what happens . It might be a long shot, but I think it's worth a try.