Crohn's Disease Forum » Support Forum » Undiagnosed Club » Scared and Tired of Worrying

11-10-2012, 12:10 PM   #1
Join Date: Nov 2012
Scared and Tired of Worrying

My body has been so confusing for years that I barely know where to start, but I need some answers soon because I worried as things keep changing.

Ever since I was ten or so, I had a sensitive stomach and easy got sick - nausea, diarrhea, lack of appetite. It would get worse if I ate coffee, rich foods, or did not get enough sleep.

I am now 28 and over the years I got from periods of feeling fine to entire months where I have no appetite and get nauseous from eating. I usually do not throw up during those time periods, but can wake up in the middle of the night with my heart racing, incredible nausea, and sometimes sharp stomach pains.

When I am not actively nauseous, I often have bowel pain that isn't so bad as to be a problem, but is persistent.

More recently, about three years ago I started having an on and off pressure, in a very specific spot in my very lower right abdomen. I was told it was probably an ovarian cyst and since it came and went with months where I didn't feel it, I didn't worry too much. However, the last three months I really noticed it and it is almost a constant pressure. In addition, it can sometimes feel swollen and when I massage it the swollen goes away and then can come back. It can sometimes be mildly painful as well, but always gets better. I got an ultrasound to see if it was a cyst and the OB/GYN said everything there was fine. It scares the hell out of me and I have an appointment with a GI, but every time I been a doctor about this stuff they don't have any answers.

Finally, my dad just got recently diagnosed with Crohn's. I have been tested for cealiac with an upper-endoscopy, which can back negative.

I don't know if this is relative, but I also have TMJ, occasional eczema, intermittent rosacia, faintness and dizziness.

I am also very confused because my symptoms don't seem to match some of the traditional Crohn's problems because I can get nauseous and I don't have diahrrea everyday.

Help! I am scared.
11-11-2012, 04:03 AM   #2
Join Date: Oct 2012

My Support Groups:
Sorry you're having such a tough time. It's hard being sick and it's an additional worry to not know what's going on.

Your symptoms could be something like Crohn's or Colitis, but they could be equally be something else. The only way you'll know is to keep going through the tests. Make sure you don't let doctors tell you everything's fine (some doctors have a tendency to do that). Keep reporting every new symptom or change in your health to them, especially if you feel things are getting worse. You can also ask them for help with symptom management while you're in the process of being diagnosed as well.

It's good that they're considering gynacological issues as well as gastro ones - you want to know they're covering all bases.

Are you confident that your doctors are taking you seriously? That's the most important thing. It can take a very long time to reach a diagonsis, so don't get too anxious to get answers right away. You might get lucky and know quickly, but you may have to deal with just being sick with "something" for a while. You've done that a long time already, so you know you can do it, even though it gets hard.

I know there are other people here who are undiagnosed. My own diagnosis is still not quite certain, and I have another non-gastro health condition also undiagnosed as yet too. You can get support here and advice on managing symptoms, managing doctors, going through tests, etc. whatever stage of diagnosis you're at and whatever you end up finding out to be wrong with you.

Hope you get some answers soon, and feel better.
11-11-2012, 08:36 AM   #3
Astra's Avatar
Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

My Support Groups:
Hiya Catrayn
and welcome

If you've got an appt with a GI in the near future then start a journal, document everything, symptoms, foods, times etc. At least it will give the gastro some idea instead of guessing. The other thing is to mention your Dad,
Also ask for a colonoscopy or a sigmoidoscopy. Or even an MRI.
Your lower right pain is where the terminal ileum is, my Crohn's is there too, it swells and I can feel the pressure too, just like you.
Left to it's own devices, this area can become narrowed and blocked,so it's imperitive you get scoped.
Also ask for full blood work, check your CRP, an inflammation indicator. You could be deficient in Vitimin D, and iron, which will make you dizzy. Also if the Terminal ileum is not working, then Vitimin B12 could be deficient too.
Good luck and any questions, just shout, and by the way, not all Crohn's peeps have diarrhea.
Lotsa luv
Joan xxx


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

11-11-2012, 01:26 PM   #4
Join Date: Nov 2012
Thanks so much for the advice. I will try and be very clear with the GI that 'you'll be ok' isn't going to work. I have had doctors tell me to just 'take more fiber' and I don't feel like they take it seriously because I look otherwise healthy.

It is so nice to be able to talk with others who take my complaints seriously
11-12-2012, 05:11 PM   #5
Super Moderator
Cat-a-Tonic's Avatar
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Hi Catrayn, welcome. I'm undiagnosed as well so I can totally relate. Number one, don't let your doctors blow you off. If they try to tell you it's IBS or depression or women's troubles or anxiety, etc - start looking for new doctors. You mentioned that your father was just diagnosed with Crohn's, so you've got an established family history, and things like IBD (Crohn's & colitis) do tend to run in families. So given that your father has it, that makes it more likely that you have it too. Not everyone with Crohn's has diarrhea - some have constipation and a lucky few don't have any change in bowel habits - so don't let your doctors say it isn't IBD just because you don't get the big D.

I agree with Joan 100%, you need more tests before anything can be ascertained. You might have to stand up for yourself and demand tests from your doctors - I know this is intimidating, but you know your body better than anyone and you know things aren't right, so don't let your doctors brush you off or push you around. Good luck, I hope you can get some answers and relief very soon. Please keep us posted!

Crohn's Disease Forum » Support Forum » Undiagnosed Club » Scared and Tired of Worrying
Thread Tools

All times are GMT -5. The time now is 12:02 AM.
Copyright 2006-2017