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Crohn's Disease Forum

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Joined
Jul 25, 2010
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6
Hi everyone :)

Glad to have found this forum. I was searching for something, although I have read many of your stories and I don't wish to be diagnosed with Crohn's or UC or any type of IBD, all my tests keep coming back normal and I KNOW something is seriously wrong.

I have been having these horrible episodes since the spring of 2009. The first time, I thought it was food poisoning. I suddenly had awful pain. I was driving in the car and that even made it worse. I got home and had horrible diarrhea and then finally threw up but still felt awful. After a few hours I felt mostly better but not great. I continued to have a lot of diarrhea for months but nothing like that, so I figured as the doctor told me, I had IBS to go along with my chronic headaches and migraine.

Last August I had 3 episodes in 2 weeks where I started feeling intense cramping pain that got worse quickly and then the horrible diarrhea and throwing up. Once was in the middle of the night. Then it never happened again. I was a little more alarmed but again my doctor didn't seem to care, and I was not insured because I had just started a new job.

This started again in January and has been happening until June about every week to every other week. It is horrible intense pain that leaves me on the bathroom floor crying when I'm not on the toilet. Sometimes it wakes me up in the middle of the night or early morning. I missed so much work. I have gone to the bathroom in my sleep.

Every day I struggle to keep my eyes open on my way home from work. I can and often do sleep for hours when I get home from work and can still go to bed at 10:00 and sleep through the night. I have constant SI joint pain, although I have had pain there for years. My bloodwork is all normal though, except for a slight vitamin D deficiency that my doctor neglected to tell me about.

I have had an upper endo (slight irritation in my stomach), x-ray of my abdomen, and ultrasound of my abdomen. I got a new doctor when she told me that I was fine and I had perhaps serious heartburn and to take prevacid and continue taking the anti-spasmodics that have done NOTHING for me. I'm waiting for the results of stool tests. I am getting a Barium swallow tomorrow and hope to find some answers. I guess I'm just hoping that maybe this sounds like someone else's story and there's hope for a diagnosis, or maybe there's something else out there that it could be. It's just baffling that doctors can't seem to figure it out or don't really seem to care, as you all know I'm sure.

Thanks!
 
Hi and welcome,

Your story is not unfamiliar here so that may be in some way comforting to you. This does sound somewhat similar to Roo's story, the constant normal results, regular episodes of vomiting and abdo pain, headaches and migraine, lethargy and joint pain. Even your words - I know something is seriously wrong - are hauntingly familiar. When Roo came out of ICU after the surgery that diagnosed her CD I asked her if she had any idea that this would happen to her. Her reply to me was "Oh, I always knew it was something serious".

I'm glad you found us. There are so many friendly and knowledgeable people here. Perhaps you could copy your post into the the Your Story Forum so there is more chance that is seen and you can be appropriately welcomed.

All the best,
Dusty
 
Hey Lauren and dusty Kat there are two double posts on this, I just posted on the other. Maybe a mod will see this and adjust it?
 
I can relate to your story Lauren, I have been going through the same thing since November of 2009. Good luck with your test.
 
Hey Lauren and dusty Kat there are two double posts on this, I just posted on the other. Maybe a mod will see this and adjust it?

Ok I moved mine to this one..

Hi Lauren welcome to the forum! You sound like I did in the early days of my Crohns, I was like you had many tests, CT scans and others alike. Never had a stool sample til this past Feb and nothing. I have had Crohns over 18 years and it shows nothing. I have had a few scopes at times and says nothing, and I am in pain.... I thought maybe I was willing it? Not possible, and I know that.

I am not impressed with your doctors not seeming to care? And because you didnt have insurance at the time... he/she is a doctor for the money. Dislike those types, and there are many. First do no harm is their oath.

I think you need to either get a colonscopy done and or change Gi's specialist. Fresh eyes can help and see what others dont.

Barium follow throughs are a good way to discover narrowning which I suspect you may have. When you have intense pain and vomit, it can be a partial bowel obstruction. Trust me on this, you never want to get a full blown one. Watch your diet, stay away from chewy foods, nuts, meat, and if you have diahreah eat bananas, mashed pototos and applesauce, they are safe foods. So sorry you are going through this nightmare, I hope you get relief soon. So many great people who help you. Telling us what state you live in can help doctor wise. .
 
Hi Lauren, welcome to the forum!! Your story regretfully seems all too common on here. It seems that some docs are extremely reluctant to dx IBD. There probably aren't many who could give better advice than Jett!! Certainly not me, so I'll just say good luck and glad you found us:).
 
Hey Lauren and dusty Kat there are two double posts on this, I just posted on the other. Maybe a mod will see this and adjust it?

i've merged the two threads & deleted the other one now.


hi Lauren, welcome to the forum. i can also commiserate totally with your frustration and experiences - it took years for my symptoms to be taken seriously, leading to diagnosis, despite many outward signs that i really wasn't well.

you know your body, you know how you feel, and you know when something's wrong - keep up the fight to get more tests until someone gives you an answer, even if it means changing consultants.

i agree with Pen that a colonoscopy would be a definite way to go right now - maybe the results of the barium meal with lead to that.

good luck - i really hope you get some answers and appropriate treatment soon!
 
hi lauren,

you sound so like me..ive had pain~diarhea~weight loss~growling loud noisy tummy,~night and day sweats..and lost 16 pounds in weight since april..had colonoscopy~they said i have red inflamed mucosa..which looked like red measles on the screen...biopsy's came back inconclusive?.
.then a barium x ray. which looked normal??
my bloods ok??
im due an endoscopy next week...im so tired..could sleep for england!!
its so strange not knowing whats exactly wrong(although they suspect crohns) i just would love to feel normal again..
im 35 years old and never in my life had a sty on my eye..in the last 5 weeks ive had 2 huge sore sty's..its weird!!
i so hope you find some answers as i know how it feels to not know..

love and light
zoe
xoxo
 
Hi Zoe and :welcome:

Wow, sounds like you are going the wars as well! Would you like to start your own thread in this forum so your story doesn't get lost in this one. That way everyone can also welcome you.

Take care,
Dusty
 
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hi Dusty!!
how do i do that?? thankyou for the kind welcome!!..

its a relief to find others in the same situation!!

thankyou xoxoox
 
Hey Zoe,

When you click on the Your Story Forum and the index comes up, on the top left hand corner it says new thread, just click on it!

PS It's under User CP
 
Hi Lauren and welcome where are you from? I hope you get a solid diagnosis soon.

A very big welcome to you.

(Welcome Zoe don't forget to post on your story) Much love to you both x
 
Hi Lauren
and welcome

I feel your pain hun! been there done that for many years! You're right, some just don't care! I hope you can get a second opinion, keep on insisting!
here's a link about the differences between IBS and IBD to compare
don't accept a dx of IBS

http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm

good luck with the tests and if you get a scope!
lotsa luv
Joan xxx
 
Thank you all so much for your quick and thoughtful responses.

I got the barium study done, not knowing it would be a 4 hour process, but it's done. They told me they would have results today but of course don't. So we'll see. I will definitely follow up with some of the suggestions you made.
 
Oh, and I live in Pennsylvania, work in Philadelphia. I went to a doctor at Crozer Hospital, was unimpressed. I got a referral for a doctor at Jefferson University Hospital. He was more concerned and more thorough but I have horrible insurance (I work for a nonprofit- it's really putting me through the ringer this year) and things have been slow.
 
Just wanted to update. I have gotten more tests, all normal. They have only looked at the small intestine so far. I had a CT enterography most recently. My doctor wants me to come in, rather than just tell me what the next test is. I'm frustrated because I can't just leave work in the middle of the day to go in for what seems like no reason.

I have an awful sore throat and a sore in my mouth. Dr. says I have aphthous ulcers in my throat which are associated with Crohn's. My hips/pelvis/SI joints are hurting more constantly, and now I'm wondering if I have arthritis. But I don't know what to do- go to a Rheumatologist, follow up with the GI first which is taking FOREVER, or WHAT.

Thanks in advance.
 
Test are done over and over , for many of us , my sure fire ways are a colonoscopy. Barium shows narrowing or looping. With a colonscopy they can take biopsies so even if they cant get to the intestines the biopsy may still show something. Tricky disease it is. Crohns can be anywhere. We all have arthritis one time or another, being autoimmune disease, anything is possible. Hope you get relief soon!
 
I would be asking for a colonoscopy with biopsy, I think it's going to be your best bet for at the very least ruling out UC or Crohn's.
I hope you get some answers soon :hug:
 
Hi Lauren, have you been rxed any meds other than the prevacid and anti-spasmodics? My son was having some small "ulcers" on his tongue and they seem to have been helped by adding a B-complex vitamin and taking care to use mouthwash after eating. I hope you can get some answers soon. Good luck!!
 
Thank you!!

I have not been prescribed anything. I take vitamins, but I'll definitely try those tips.

I just finally talked to my doctor and I am going to schedule a colonoscopy.

He also mentioned "delayed stomach emptying" was suspected in reviewing my CT Enterography. He acted like this was completely separate, and maybe it is, but I also read some research about people with Crohn's developing this problem. Has anyone experienced this?
 
I haven't heard of the delayed thing!! Good luck with the scope!! Let us know how it goes for you!! I hope you get answers!!
 
Lauren- Have you tried taking extra b12? I just started taking it (even though blood tests showed no deficiency) and there is definately a difference in me. This week I took a half hour nap after work on Friday, whereas before I was having 1 or 2 hours every day!
 
I haven't tried the B-multi in a while and I have never taken B12 specifically. I'll have to try it. I am in the same boat as you were- sleeping 2-3 hours most afternoons, waking up, and going back to bed at a normal time. I feel like it has gotten better with a heavy Vitamin D dose, but not completely.
 
Make sure it's a large dose, regular strength stuff won't cut it! I take 1000mg per day and if you get tablets, dissolve them under the tongue rather than swallowing, as some of it will be absorbed directly into the bloodstream. Any extra vitamin gets peed out, so if you get bright yellow pee after, that's why!
 
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