My "waiting for a diagnosis" story:

[Lauren_F]

Hello Crohn’s forum, my name is Lauren and I’m a 32 year old female. I am currently undiagnosed. My GI brought crohns to my attention a few months ago before she started testing. I knew that it affected your digestive tract but I didn’t know how serious it could be.

When I was 12 my mother brought me to a medical doctor who said based on a blood test that I had an ulcer. He gave me antibiotics to take. At 13 I had an episode where I vomited and had diarrhea for 4 days straight every 30 minutes. I couldn’t keep food or water down. My mom took me to an herbalist and I was given a large amount of herbal pills to take. He also pressed on my stomach to attempt to move things around. Something worked because I was able to keep food down later that night. I did end up permanently losing some feeling in my right leg because I think my organs started to shut down.

Between the ages of 13 - 30 I had a bunch of episodes where if I would eat something with too much grease, drink or if the wind would blow the wrong way I would start vomiting again with frequency. Every few months I would experience bouts of diarrhea and nausea. I use the herbal pills to stop the vomiting. I gave up meat and dairy at age 16 and have been vegan ever since. Giving up dairy helped with the stomach pain initially. In my mid twenties I started having bowel movements frequently. If I’m comfortable at home I can have as many as 5-8 a day. On an active day it will still be 3-4. It blows my mind that people are walking around out there having one a day! If I’m not constantly pooping, my stomach hurts. If I eat anything that’s not soup or liquid, my stomach hurts. I gave up gluten, unfortunately before biopsies to test for celiac.

I have some insurance now and I and have had a colonoscopy, an endoscopy, MRIs, a CT scan and blood tests. On the colonoscopy my GI found polyps in my colon. They are precancerous. She sent me home with Prilosec and Reglan.

Here are the notes I was left with:

-- Your endoscopy showed some inflammation in your lower esophagus. This is related to reflux. I recommend that you take omeprazole 20 mg twice daily (30 minutes before bfast and 30 minutes before dinner) for 6 weeks.
-- We also took some small intestinal biopsies to rule out celiac sprue.
-- You had a few polyps in your colon, which we removed.
— Internal hemorrhoids


I was called weeks later and told that I have nodules in my small intestine that they are going to have to do another endoscopy to investigate. They also made me talk to a geneticist to discuss a familial polyp condition. The geneticist does not think that there’s enough evidence to point to that at all.

One MRI from the emergency room showed some possible thickening of my colon wall. Another showed that I’m constipated (which is funny because I poop way too much).

My boyfriend and I were recently told by one of his coworkers that he spent 3 years trying to figure out what was wrong with him when he had the same insurance as I do (Kaiser). The moment he walked into different GI office with another insurance they told him he had Crohns. I’m really annoyed because this has taken a huge toll on my personal life, employment history, school, etc. All I want is treatment that will relieve some of my daily symptoms. I'm wondering if this story sounds familiar to anyone else here. I've been lurking for a while and I see some similarities to other's struggle.

 

[Cat-a-Tonic]

Hi Lauren, welcome to the forum. Can I ask, what specifically is in the herbal pills that you take for nausea? If it's something like ginger, that should be fine as ginger is a good natural remedy for nausea and shouldn't make things worse. If it's something like peppermint, though, that can actually worsen reflux - peppermint can relax the valve between stomach & esophagus, which allows more refluxate to come up. You mentioned already having some esophageal damage from reflux, so I would hate for you to take something that makes it worse!

It is actually possible to be constipated and have diarrhea at the same time - the liquid stool sort of flows over the constipated plug. So I'm presuming they saw something like that on your MRI. As for losing some feeling in your leg, that's very troubling to me and I've never heard of anything like that! Have you ever had that investigated?

As for the insurance thing, I don't think it's insurance companies specifically to blame for lack of diagnosis, but all doctors are definitely not created equal and I would encourage you to get a second opinion from a different doctor if your current doc can't figure you out. Some doctors will blow you off right away and others will work tirelessly to get answers for you, so you might just need a doctor who's a better fit for you. As for the co-worker who you mentioned, who walked into the new doctor's office and immediately got diagnosed - I would be highly suspicious of that, too. Most (good) doctors will not diagnose something like Crohn's without hard evidence (typically, most doctors like to see definitive evidence on biopsy). Having your doctor run a lot of tests to confirm/rule out things is a good thing in this case, as there are plenty of other things that can mimic Crohn's-like symptoms (Lupus, Addison's, Behcets to name a few).

I hope that was slightly helpful! Welcome to the forum!

 

[Lauren_F]

Thanks Cat-a-Tonic. I have been checked for Lupus but I'm not sure about the others.

Unfortunately with a lot of Chinese medicine it's hard to really know what's in the formulation but there are ingredients lists online found under "Chinese Medicine Curing Pills". They were helpful for me before I had a prescription for Zofran. They are pretty commonly used for car sickness and morning sickness.

 

[UnXmas]

I was going to say the same thing Cat-a-Tonic said about constipation and diarrhoea - the medical term for it is "impaction and overflow".

Have you tried any other conventional medications for nausea and vomiting? There are quite a few. Wikipedia has a very long list of antiemetics: http://en.m.wikipedia.org/wiki/Anti-nausea
If you're interested, I can tell you about the few that I've tried and found helpful?

As for the problem of trying to get a diagnosis, I know it all too well. However, I'm in the UK, where insurance isn't an issue. Finding the right doctor, however, often is. Sometimes symptoms can be very severe and yet tests are normal. In this situation, you need to keep trying to find a doctor who accepts this. They can be hard to find, but such doctors do exist!