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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Undiagnosed...afraid to get checked and afraid to not get checked


05-09-2017, 09:51 AM   #1
wildmala
 
Join Date: May 2017
Undiagnosed...afraid to get checked and afraid to not get checked

I keep ‘jumping the fence’ on whether Crohns may be what I’m dealing with or not. And so I go back and forth on whether to bother going in or not. But I’m just so tired of dealing with these ‘episodes’. I’m partly scared of going in because I honestly do not feel like doctors take me seriously. I’ve been in numerous times over the years for various stomach related things and usually end up being sent home with either a recommendation to exercise more or ‘take this pill every day’ to keep your heartburn at bay. They do a lot of ‘suspecting’…I suspect you have GERD, I suspect you have a sensitive system, I suspect you have ulcers…. I’m tired of suspecting and would like to stop focusing on my symptoms and figure out the cause. I’m afraid of going in and them, once again, making me feel like a hypochondriac and send me on my way.
And I’m partly scared of the tests they will want to do if they DO take me seriously.

I have had stomach problems since I was a kid. I remember as a kid having so much stomach pain I would drop to the floor in the middle of playing and curl up in a ball on the floor. I remember them doing tests – me drinking gross stuff and standing in front of some screen. In the end they sent my mom home with an enema. My poor mom.
Throughout the years I’ve always just had a sensitive stomach. I cold sores a lot…don’t know if that’s related. A few years ago, I decided to go gluten free and it helped quite a bit for a while. Over the past couple years though, I have had a growing and growing issue with episodes. The episodes are usually pain in my belly – kind of centered at my navel area and to the right. Sometimes it just feels like I’m walking around with a softball in my stomach. And sometimes I will be constipated and super gassy and then be hit with a large and uncomfortably bowel movement. Or have to take multiple trips. I haven’t had constant and/or bloody diahrea so that makes me wonder if maybe Crohn’s isn’t what is going on. I have had some blood in my stool here and there, though. My stomach will just hurt...constantly...and feel like it's "swimming". And I have constant pain behind my breastbone. And heartburn. When it’s bad, I literally can take a bite of toast and feel it go down my esophagus because it hurts going down. And fatigue…when my episodes are happening, I am so FREAKING tired! I can sleep all day if I could. And emotionally just blah!

When it’s bothering me, I usually am down to just eating rice, potatoes, and oat cereal because I just feel like it’s the only thing I can handle. I haven’t lost a ton of weight…in fact, I’ve struggled with it since my late teens…so that’s another thing that makes me wonder if the Crohn’s possibility is my imagination.

…And then the symptoms will wane a bit for awhile…and I’ll start to convince myself that it’s nothing more than just having a sensitive stomach and to stop being a hypochondriac. I don’t want to come off that I’m HOPING for a Crohn’s diagnosis. That is definitely not it. Instead I’d just like SOME sort of diagnosis that makes sense and isn’t just focused on particular symptom. They all have to be related right???
I’m on the tail end of an episode now and am in the middle of playing the back and forth game of ‘do I go in again or not waste my and the dr.’s time’. In talking to my mom, she said family history on my dad’s side consists of ulcers and bleeding ulcers (dad and grandpa), and Crohn’s on my mother’s side (my grandma, great grandpa, and great aunt).

My daughter has started experiencing bad stomach pains too...makes me wonder again...

I don’t know what I’m looking for in posting this. Maybe looking for someone who can relate… Maybe just being able to tell someone what I'm struggling with.
05-09-2017, 10:08 AM   #2
ronroush7
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Welcome. I am sorry for all you are going through. I and other people on this forum can relate to what you are going through. I hope you find out what is going on soon and can get some relief. Please let us know how you are doing. Come here anytime.
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05-09-2017, 10:23 AM   #3
scottsma
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Hello and welcome to the forum.The fact that you are here indicates that you definitely have a problem that needs investigating.Your symptoms do point to digestive issues,Gerd being one of them.You don't need to lose weight and have constant trips to the bathroom to have crohns.Your family history alone points to gut problems.I think you need this sorted.Make a list of symptoms and roughly when and how long.Mention your family history too.Don't put off any longer.I don't mean to scare you but crohns has a habit of simmering away silently then showing it's ugly head overnight.Hopefully it's nothing to serious though and you just need a short course of meds.or a tweek with your diet.First step is your primary care doctor.They should suggest an appointment with a G.I. and tests should include,calprotectin and a colonoscopy to begin with ,to get the ball rolling.I'm sure there will be others along soon who will offer their advice too.Please keep us updated,as there will be others in your situation who will welcome your input.Feel better soon.
06-17-2017, 12:34 AM   #4
Tummyhurts
 
Join Date: Jun 2017
Hi there, I just wanted to say I can totally relate to that feeling of fear of not being taken seriously and not wanting to go in. I too am undiagnosed and have dealt with the dr basically thinking its in my head/anxiety/whatever. My first GI actually said "I saw you were on the schedule and i thought theres really nothing else i can do for you!" It sucks! And not wanting to do the tests too, I get that completely. Plus when symptoms wane it's harder to convince yourself that it will be back and that you really still need to know what it is.

I am waiting to see someone new. It kind of took me getting to that fed up with symptoms point to try again. It sounds like youre there. We know we have real problems but i think it just takes the right dr to look into it further. I try to remind myself that just because they think it's nothing doesn't mean it's any less real for us.

Good luck : )
09-27-2017, 10:08 PM   #5
ChronicallyAwesome
 
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I totally get the feeling of not wanting a dx of IBD but hoping for a dx that explains your symptoms. I think it's only natural, after dealing with symptoms for so long, to want an explanation for why you're going through all of this. Plus once you have a dx, you can actually begin treatment for it instead of being in this weird in-between stage.

I also held off on going in and having my GI symptoms checked out for probably much longer than I should have. I basically got to the point where all of the symptoms became too much for me to think about/handle and the fear of diagnostic tests was outweighed by the fear that there was something wrong with my body and that it could possibly get worse.

I hope you get the care that you need for your symptoms.
10-08-2017, 08:29 AM   #6
hopeless
 
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I keep ‘jumping the fence’ on whether Crohns may be what I’m dealing with or not. And so I go back and forth on whether to bother going in or not. But I’m just so tired of dealing with these ‘episodes’. I’m partly scared of going in because I honestly do not feel like doctors take me seriously. I’ve been in numerous times over the years for various stomach related things and usually end up being sent home with either a recommendation to exercise more or ‘take this pill every day’ to keep your heartburn at bay. They do a lot of ‘suspecting’…I suspect you have GERD, I suspect you have a sensitive system, I suspect you have ulcers…. I’m tired of suspecting and would like to stop focusing on my symptoms and figure out the cause. I’m afraid of going in and them, once again, making me feel like a hypochondriac and send me on my way.
I can definitely relate. Something has been not right with me for years. I go through the same cycle every few months. I get symptoms, try to ignore them until I absolutely crash, desperately seek out a doctor looking for help, they do a blood test and it comes back fine and they dismiss it. They make me feel like an idiot.

So I am literally frightened of asking any doctor for help now. I feel beaten down by them and I don't have money to keep paying for them to say "oh it's probably your fibromyalgia".

10-08-2017, 09:05 AM   #7
ronroush7
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You know your body better than anyone else.
10-08-2017, 10:05 AM   #8
scottsma
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Please,please please,don't give up looking for a diagnosis.None of us want a crohns diagnosis but we do need to be taken seriously.If you don't feel "right" then you're entitled
to be taken seriously and be treated accordingly.Don't leave things too long or you might find yourselves on a trip to A&E or the E.R.
10-08-2017, 11:15 AM   #9
Bufford
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I think all of us go through periods of denial and just hope it goes away. Its best to discuss it with your doctor, write down your symptoms and track your health pattern. Track the foods you have been eating and see if there is a connection to how your health responds. Sort out which foods cause you to feel good, and the ones that don't. Watch the stressors; stress will greatly aggravate the problem, Crohn's literally feeds off of stress. Don't let it go too far, IBD is best controlled when found early.
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