Teen Solves Her Own Medical Mystery

[Celebration]

http://www.comcast.net/news/badeaupov/816/teensolvesherownmedicalmystery/

What do you do if the doctors can’t figure out what’s wrong with you? Washington high school senior Jessica Terry decided to do some investigating of her own.

The teen discovered she had a granuloma which indicated Crohn’s disease (an autoimmune disease that attacks digestive cells and prevents absorption of nutrients) while studying tissue diseases in histology class.

She told Komo-TV that she had been sick for a very long time and suffered from fevers, vomiting, anemia, and severe abdominal pain.

Terry was looking for more than a good grade when she decided to focus her class project on her health issues She asked her pathologist for her own tissue slides and studied them for days.

The teen’s teacher, Mary Margaret Welch, told the TV station, "All of a sudden she says, 'I think I found something.' I say, 'what?' 'Miss
Welch, Miss Welch, come over here. I think it's a granuloma.'"

[Mythsaje]

1. Give that young woman a free ride through medical school!

She's earned it.

[BrklynLiberal]

2. Absolutely!!!

[paulsby]

3. she starts nursing school in the fall

this is a great story.

[Ms. Toad]

4. No doubt what this young woman did was remarkable

Unfortunately, everyone needs to be their own medical detective these days - and few adults can even manage what she accomplished. I am glad she is heading into the field of medicine - we need more folks like her.

But in defense of the doctor, the second article the first article links to (http://www.pnwlocalnews.com/east_king/iss-s/news/45722467.html ) tells a slightly different story.

She had been diagnosed years ago with either Crohns or Ulcerative Colitis. Both are forms of inflammatory bowel disease, and it can be very hard to distinguish one from the other. Even years after narrowing the disease down to IBD, some diagnoses are still uncertain. The only absolute way to tell for sure is to remove the colon - if the disease comes back elsewhere in the GI tract it was Crohns. If not, it could still be either.

My daughter had a classic case of ulcerative colitis diagnosed at age 4, both in terms of symptoms and pathology- but when she started having other symptoms when she was around 13 that are more often associated with Crohns they ran another series of tests that still can only give an odds based diagnosis (close to 100% chance that it is UC). We're pretty sure which she has - but it is still possible that something else could come up that would make them take a third look.

[mopinko]

5. where do you live?

chron's is easily distinguished from uc by a biopsy done during a colonoscopy. remove the colon? that is from the middle ages.

[Ms. Toad]

8. Biopsies are not always that clear cut.

But that is the pathology I was talking about. She's had biopsies during several colonoscopies, and they all do look like UC - but as I said, about a decade after diagnosis she had things going on that are more often associated with Crohns than UC so they did a series of blood assays that were relatively new at the time to confirm their diagnosis. I also know a large number of people who are being treated at the best GI centers in the country (Mayo and Cleveland Clinic to name two) whose diagnosis changed over time - and whose physicians are not so sure that there is such a clear line between the two diseases.

Here's a quote and a link for you: >>Ulcerative colitis and Crohn's colitis usually have different clinical presentations and characteristic findings on radiologic, endoscopic, and pathologic examinations, enabling differentiation of these two forms of inflammatory bowel disease. However, overlap in the clinical, endoscopic, and histologic findings occurs in up to 15% of cases <9><< http://www.ajronline.org/cgi/content/full/184/6/1843

I was not suggesting removing the colon as a diagnostic tool (although a number of people with UC or Crohns do have to have the colon removed because of the discovery of dysplasia during screening colonoscopies). At that time, if it comes back elsewhere - you know it was really crohns (regardless of what it looked like before) because UC is strictly limited to the colon. The article I linked to describes this phenomenon.

Edited to correct typo.

[Orrex]

12. And it could leave you with nothing but a semicolon

Thank you, thank you.

[mopinko]

13. try the veil

here all week, i would bet.

[eppur_se_muova]

15. What are you, the Taliban? nt

[mopinko]

18. ? nt

[Orrex]

19. veal =/= veil

[mopinko]

20. doh! nt

[ayeshahaqqiqa]

6. Wonder if the kid ever had measles

There's some indication that Crohn's is caused by the measles virus, much like shingles is caused by the chicken pox virus.

[Ms. Toad]

9. Some studies have shown a correlation

between near simultaneous exposure to mumps and measles and an increased incidence of IBD. That's why I support administering the MMR vaccine as at least two, and perhaps three, separate vaccinations. The cost is relatively small to separate the vaccinations in time - so why risk the correlation actually being causation (or a contributing factor).

Nothing has shown causation so far, and I am not aware of any correlation between Crohns and measles without close in time proximity exposure to mumps.

[ayeshahaqqiqa]

10. And it is nearly impossible to get the vaccinations that way now

We have parents of patients doing it that way, but suddenly the separate vaccines are not to be had.

[LeftishBrit]

14. This was a theory at one point but there is no evidence that it's correct.

Personally, I have had Crohns since the age of 5. I had the measles vaccination at the age of 8, and it 'took', indicating that I had not been previously infected. So definitely not related to measles in my case - and most research does not suggest this either.

[Mira]

7. Very impressive and smart kid. She learned early to take care of herself K&R

[artfan]

11. It is not easy to diagnose

I showed signs of chron's shortly after I turned 12 by the time I was 15 I weighed 84 pounds and could keep no food down. Finally in desperation my parents took me to a surgeon who did emergency surgery to drain an abscess and remove my appendix tests proved chron's . Eventually it all worked out but I still have some bad days. My brother also has Chron's my mom and another brother have colitis, I can not count the number of cousins who also have IBD. Interesting fact we all tend to worry way more than most (which came first??) IBD is not easy to live with and it is often embarrassing as well. I applaud this young woman. Hopefully she will lead an long and productive life.

[cpompilo]

16. I have to pipe up here.

Have had Crohn's for 21 years, finally diagnosed in 2001. Went to 2 "specialists" for Crohn's who only wanted to prescribe drugs, which did not work for me. After continuing to decline, and I will spare you the gory details, my husband googled diet + Crohn's and found the Specific Carbohydrate Diet which saved my life. See www.BreakingTheViciousCycle.info I am also about to start taking Low Dose Naltrexone. see www.LowDoseNaltrexone.org for information. It sounds very promising for not only bowel diseases, but MS, Hiv Aids, and a whole host of other diseases.

I hope that teen can find relief from this horrible disease. Glad she was persistent. Perhaps she'll find the SCD as she researches her disease.

[Celebration]

17. I hope so too

I looked at the website and it looked good-- addressing leaky gut is so important. It looks a bite like The Zone diet, but with fermented stuff, and big emphasis on repopulating the gut with helpful bacteria.

I am glad you found something helpful.

[LeftishBrit]

21. With Crohns, a lot seems to be quite individual..

For many people, including myself, drugs are helpful and have done a lot to prevent the need for surgery (which most people now think should be avoided unless really necessary, as the disease is likely to eventually recur somewhere else in the bowel anyway). For some, they don't work or have unacceptable side effects.

Most people with Crohns find diet to be an important part of the treatment, but *which* diet seems to vary between individuals. For me, and for some others I know, avoiding *too much* fibre is important - so what is a very healthy diet for many people may not be for some of us. E.g. Brazil nuts, classed as legal in the diet that is helpful for you, are definitely *il*legal for me! Also, relatively minor allergies and intolerances can cause disproportionate problems if someone has Crohns. For instance, for some, mild degrees of lactose intolerance can cause milk to have a laxative effect, which might be trivial or even beneficial in some people but better avoided in those with Crohns. At any rate, people need to try and see which regime works best for them. I am glad you've found what works for you.