Undiagnosed and extremely frustrated

[hmash]

Hello all, I'm pretty new here, and I really need support considering I've been living a nightmare for three months now. I know that's not a long time for some of you, but for someone like me who was one hundred percent healthy before all this started, it seems like forever.

For basics, I'm an 18 year old female currently attempting to complete my freshman year. Going way back, I was diagnosed with mono in March of 2014, but prior to that, I never had any diseases or health problems besides broken bones. After mono and recuperation, I was relatively healthy, plus or minus a lot of new colds and skin cysts. Three months ago, in September of 2015, I had this extremely random pain attack during a stay at home one weekend, and ended up in the ER four times in 3 days due to /severe/ pain, nausea, and vomiting. In fact, I had my SO take me from one ER directly to the next because all they were doing was pumping me full of pain meds and sending me away with a diagnosis of IBS.

All the CT scans, x-rays, and blood work came back fine, and I was finally admitted thanks to a wonderful ER doc who said she wasn't comfortable sending me home in such a state, and after a horrible week of NPO and endoscopy after endoscopy, they did a HIDA test and found my gallbladder wasn't functioning at all- it barely showed up on the test! So they took it out, and that took away that severe and debilitating abdominal pain. Looking back though, I still had pretty bad cramping, but I chalked it up to surgery pains. I developed a horrible case of never ending diarrhea, and that is still there today.

Fast forward to the beginning of October of 2015, and I started getting even more debilitating stomach cramps. So bad I kept having to go to the ER again. Once more, every single one of the tests they subjected me to came out clean. I was admitted to a hospital for three days, but all they did was put me NPO and refuse to give me pain meds, because at this point I was being treated like a drug addict. I told them to release me since they were wasting my time and money, and when I followed up with my GI doc, she put me on an anti-spasmodic, heartburn medication, and nausea medication. She said to wait 'a few weeks' and see if that helped, but the pain was excruciating. At this point, I had literally missed more weeks of college in the semester than I had attended; I couldn't afford to wait another month!

About four days after this meeting with the GI doc, I end up back in the ER for more pain, of which they do nothing of course, and I'm basically stuck on the couch for another week with nausea, vomiting, and pain. I had been fluctuating in my weight a lot since my gallbladder problem, my average at 165 before all of this, with my weight jumping anywhere from 150 to 170 during this. About a week and a half ago, I ended up back in the ER for four day long constipation that didn't even budge with three pills of dulcolax. They x-rayed me for an obstruction and sent me home.

So here I am, still undiagnosed and extremely frustrated. I understand that it takes time to diagnose Crohn's disease, and some people have been living with this for years without an answer, but I can't take this anymore. It's at the point where nobody believes I am sick because they can't see it. Unless I am physically throwing up in front of them, they're all started to give up on me. I'll give a final list of my symptoms below, just for threads sake. I don't really know what I expect from posting this, but maybe some support and person stories would help make me feel less alone and hopeless.

My symptoms:
- Joint pain (burning; mostly in my fingers, toes, and ankles)
- Constant nausea
- Vomiting with meals
- Intermittent abdominal cramping, worse after eating
- Extreme fatigue
- On and off chills and sweats
- Persistent (bloody) diarrhea
- Mouth ulcers (that like to stay for a day or two and then move)
- Mucus leaking from the anus

I'm so fed up with this crap, and I'm supposed to be scheduled for a colonoscopy shortly, but we all know how that goes. :shifty:

 

[GregH65]

Hey H, I was just diagnosed with Crohns after a 6 week battle with diarrhea only. No nausea, no cramping, no vomitting. The point in telling you this is that on the day I took myself to the hospital, Oct 24, I also had severe joint swelling, muscle aches, mouth sores, and was breaking out in sores on my palms, arms, flanks and legs.
I was treated very aggressively in the hospital with double contrast ct, MCRP, colonoscopy, MRI, double antibiotics, and steroids. My GI doc is GREAT, and said all my symptoms were classic Crohns and that rarely do they see them all at the same time.
Your symptoms are almost a mirror of mine, but the big tell in diagnosis was the colonoscopy.
I'm lucky to get diagnosed so fast, and you just need to find the right aggressive doc.
I'm home now for 3 weeks, weaning off the steroids till Christmas, taking mesalamine and finding out what foods work. So far it's proteins, simple carbs, well cooked veggies, creamy soups etc

 

[GregH65]

On, no salads, no raw veggies, avoid fruits with skins, no whole grains. Low residue, low fat. No composite meats. Some immediate diet changes may help you now. I also use liquid multi vitamins, probiotics, and aloe gel

 

[Clash]

A simple test your GI could do is a fecal calprotectin stool test. It determines if there is inflammation in your GI tract. That doesn't necessarily mean that you have CD but if the results come back high then more tests are warrented, such as MRE, colonoscopy etc.

A fecal calprotectin test is more specific than say blood work inflammatory markers such as CRP or SED since they show inflammation anywhere in the body.

Hope you find answers soon.

Sometimes a liquid diet will bring relief while you wait between appts. Boost, Ensure and the like will work for liquid diet.

 

[Seanriv]

Man, your symptoms make mine look like a joke. Hope you find someone willing to not give you the run around soon.

 

[buttER]

Hi hmash
You have come to the right place. Welcome!
You really are having a horrid time and I hope an answer comes soon.

GregH65 and Clash make sensible suggestions. If you spend longer on this forum you will see that diet keeps coming up: either because certain foods tend to give people more symptoms, or by changing diet people see an improvement in their health. If you intestines are so badly affected you can think about eating food that will not make things worse. One culprit seems to be fibre and many people benefit from a low fibre diet when they are in a flare (similar to what GregH65 suggests). I am not a doctor and I know the advice for healthy people is to increase their dietary fibre. You will probably have to experiment to see what works best for you. Have a snoop around the forum to see what other people are doing.

Good luck!