I feel like a liar

I was just diagnosed in March with Crohn's Disease. I felt fine apart from new, horrible stomach cramping and diarrhea that seemed to occur after I ate beef. At the time I thought it was all just coincidence and it was just stress from school and over excitement from my nephew's birth that was causing it, but a colonoscopy on March 1st showed ulceration throughout my rectum. It's like ever since I've been on a downward spiral.

I've missed more days of school than I've attended the last month or so. Every morning I wake up and I feel okay but sometime between getting out of bed and taking a shower that all changes. Every day it's something. Most days I'm cramping so badly that I can't stand up straight, or I'm nauseous, or having diarrhea. On the rare days that I actually manage to drag myself to school I can hardly stay awake. I sleep up to fourteen hours a night if I'm allowed, which is drastically different from my usual five hours of sleep from before I got sick.

My doctor put me on Asacol HD 800mg 6x daily to hold me over until I can have the pillcam done. He suspects that I have crohn's in my small intestines as well, likely worse than what he's seeing in my rectum, but my insurance won't approve the pillcam until I've undergone a battery of other tests. During a particularly rough period a few weeks back, when my Iritis and mouth ulcers showed up again accompanied by blood in my stool, my GI sent me for blood work and a CT scan. The scan showed fat stranding in my rectum and the blood showed that my white blood cell count is low. My GI had me stop taking the Asacol and he put me on a nightly enema that's supposed to help heal the ulcers from the inside.

A little over a week ago I went in for a flexible sigmoidoscopy in which he found new ulcerations. He took a biopsy which came back negative for inflammation, which only frustrates me more. My GI sees it as proof that there's more going on in my small intestines, but I see it as a slap in the face. I feel so unwell, yet none of the tests are showing anything. It isn't something others can see and it makes me feel like a liar. My mom can't take my temperature or run blood work or anything else to prove that I'm sick. She has to completely go on my word. She's been great about it but every time I stay home I feel horrible. On top of feeling ill, I feel guilty for not being able to prove to her without a reasonable doubt that I'm not faking it.

I'm going to the hospital tomorrow for a small bowel follow through, which is the last test my insurance requires before they approve the pillcam. A part of me is excited, because it's been a long road to get the pillcam approved and finally I'll know once and for all what is going on, but at the same time I'm worried. If it shows more ulcerations in my small intestines then that sucks but my GI has already promised to start me immediately on Remicade (he's not a fan of the steroids) should that be the case. But if he finds nothing then that's great. That's what I'd prefer. But if that's the case then it's back to the Asacol that doesn't seem to work, and back to feeling unwell with no reason for why.

I'm sure you've all felt this way to some extent before. What was your situation, and how did you deal with it? How did you get over the guilt? I guess what I need is a pep talk. Sorry for the length of this post. I had a lot more to say than I originally meant. Thank you to anyone who has gotten this far, and a huge thanks to anyone who responds!

Hello Kristina,

Not intending to be flippant in any way - but I was reading through a thread on here of someone who posted images of their colostomy photos on the wall (I mean real a real wall - not facebook) so people were in no doubt she was ill - even if sometimes she did not seem it. It was all done in good humour!

I am sure you will have many - more helpful - replies than that - but wish you all the best.

Its one of those diseases that you simply can't show to other people but its not like we ask cancer patients to prove it or those with heart disease etc. I mean come on! Is it really so hard to believe that if every other organ in the body can have something wrong with it then maybe, just maybe the intestines can be affected to and not by food? I shouldn't have to show people a sample of my bloody diarrhea to prove it. They'd think there was something else wrong with me if I started doing that.

No one here is faking it so there's nothing to feel guilty about.

As far as your test tomorrow goes, I really hope your hospital has the new barium. The old barium was really hard to hold down. Chug it and be done with it. I know mine showed ulcerations when I had it done the first time so I hope yours will show proof of some kind too and maybe you wont even need the pill cam (but who knows, we'll see).

Asacol alone never did anything for me either. I took it with Prednisone at first then nixed the Pred and used 6MP and Entocort. Entocort has less side effects than Prednisone but I don't know how bad things really are to say that Remicade is too much too soon. Only you and your doctor can decide that. Keep us posted on how the test goes.

The only kind of person I would think might be feigning something like this would be someone who had nothing going for them. They might be doing it for attention, or, to get out of their responsibilities You don't seem to fit this type of person, so I wouldn't worry about it. However, I do like the idea of using the pics from the colonoscopy as proof, just in case, LOL:rof::hug:

Kristina, do not feel guilty! you are doing enough suffering physically without adding to it mentally. As a parent I guarantee you that your Mom is just concerned with seeing you healthy. She is not wondering if you are lying or faking.
It is a hard disease because the suffering is private and not obvious, but that is also an advantage sometimes, because when you feel ok you can go out and act like nothing is wrong, and try to have a 'normal' day.
I hope you get answers finally, and feel much better very soon! You seem very brave. Sometimes it is a long process to find out exactly what is going on and why, but it doesn't mean that no real disease exists. It just means that we aren't perfect at figuring it out yet.

Jobell said:

Kristina, do not feel guilty! you are doing enough suffering physically without adding to it mentally. As a parent I guarantee you that your Mom is just concerned with seeing you healthy. She is not wondering if you are lying or faking.
It is a hard disease because the suffering is private and not obvious, but that is also an advantage sometimes, because when you feel ok you can go out and act like nothing is wrong, and try to have a 'normal' day.
I hope you get answers finally, and feel much better very soon! You seem very brave. Sometimes it is a long process to find out exactly what is going on and why, but it doesn't mean that no real disease exists. It just means that we aren't perfect at figuring it out yet.

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That's what I do, when I feel well I just enjoy myself. That is important to me because the good times help me to keep my spirits up when I don't feel as well. Kristina, I would just trust that your Mom wants you to be healthy and happy. Hopefully, you get to the root of the problem and then live in the medical solution.:rosette2:

I have been through this for 11 years with my daughter she is now 28. Your mom will be there for you as she is now. you are not a liar! my daughter went through the last couple of years in high school with the same problems and college. everyone seems to "know what you are going through" but they never have a clue unless they have been through it themselves. the teachers and staff didn't think she was sick. (and i even am a teacher at the same school!) believe me your mom can feel your pain! and probably wishes it were her instead of you, i know i have many times! everyone here knows what you are going through this is a great place to vent and get support. it is a great place for your mom, too. prayers for you and your mom.

Dude. You have ulcerations yes?

Say this.
"The doctor says I have ulcerations. Do you believe me?"
She will say yes.
"If I had a stomach ulcer it would hurt, is that correct?"
She will say yes.
"So I have many ulcerations in my bowel. How will I feel?"
She will understand.

You can lead a horse to water, but you have to show it that it is thirsty before it will drink.