My Story Thus Far

[Crohnie86]

Hi everyone! I just wanted to introduce myself. I'm new to the forum. My name is Sarah.

I've had bowel problems since I was born. My parents had to rush me to the ER when I was 18 months old because I wouldnt go to the bathroom. I was apparently severly constipated. They were able to resolve the issue.

The constipation continued throughout my life, and still continues. It wasnt until I was around 17 years old that I began to experience new symptoms, which have only gotten more severe over time.

I received a Hemorrhoidectomy/Sphincterotomy in 2008 due to hemorriods that couldnt be resolved any other way.

I moved to another state, and switched my GI Doc in 2009 to someone in my new state. My new GI suggested a gluten-free diet. I went gluten-free for approximately 5 months, but only became more constipated and the pain didnt reside.

I was rushed to the ER on September 12th (my, probably, 12th visit to the ER throughout the years) due to severe abdominal pain, and was given a CT Scan with Contrast, and a CBC.
The Doctor came back into the room and said "I'm not usually supposed to say this, but your results are indicitive of Crohn's. Your colon and small intestine are thickened. I want you to get a Colonoscopy from your Gastro-Doc as soon as you can". He also placed me on two anti-biotics;Cipro and Flagyl for 10 days. His reason behind that was "People with Crohn's have a tendency to get more infections. Take it just in case".

I spoke to my mother after the ER visit, and she told me that my aunt was in the process of searching for a diagnosis as well due to similar symptoms, and that my grandmother had colon cancer.

That Colonoscopy he recommended was performed yesterday. I havent received my biopsy results yet, of course, however, they did say that the only thing that showed on my results were some hemorrhoids. The colon and small intestine were not inflammed.

Now begins the anxious wait for biopsy results.

Symptoms are as follows (for those who are curious):
*Constipation w/occasional diarrhea
*Severe abdominal pain
*History of Kidney Stones (first stone was a 6mm at 17 years old)
*Low-grade fevers are common
*Occasional nausea and vomiting
*Night sweats
*Bloating
*Fatigue
*Feeling of non-completion of bowels
*Joint pain/stiffness (wrists, hips, and knees mainly)
*Anemia (off and on)
*Mouth ulcers (off and on)
*Stage 2 Rosacea
*Bleeds and bruises easily
*Irregular Monthly Cycle
*Tilted Uterus


Thanks for reading!

 

[chattertess]

Hi Crohnie86 welcome - I'm new here too!

Sorry to hear you've been through the wars with this, and I can relate to quite a lot of those symptoms, so it does sound like Crohns to me. However, there are so many conditions similar, I couldn't say its a certain thing.

Try not to over worry about the biopsy (easier said than done, I know...and slightly hypocritical haha), as the stress won't help your symptoms.

Hugs x

 

[Crohnie86]

Hi! Nice to meet you!
You're right. It's definitely been a battle. I'm really hoping that something will show up on my biopsy results. Otherwise, I'll probably have another Doctor who believes its "all in my head".
I'm just so ready for a diagnosis. I want to be able to say "Here's what it is, and here's what needs to be done". I'm honestly not sure what to do if the Doctor says the biopsy shows nothing...

 

[nikimazur]

It is extremely successful, and the first colonoscopy or even the second or third may not show anything. I had been living with severe diarrhea and many other symptoms, for about five years being diagnosed. I even had kidney stones. It took doing 3 endo/colonoscopies to finally find the magic biopsy. My doctor explained to me, that crohn's symptoms can show up quite some time, even years before it fully develops. I had eliminated everything else, including IBS, parasites and celiac as a route of my disease. What about any blood tests, such as a complete celiac panel as well as an IBD panel, with inflammation rates. Even though two colonoscopies showed no inflammation, my c-reactive protein and sed rate were rising steadily. It finally showed up on a ct-enterography and then recomfirmed through my fourth colonoscopy. Crohns is a stinky little bugger who can be soooo difficult to diagnosis. Thoughts and prayers.

 

[Crohnie86]

Hi Niki!
Geeze, it sounds like you've been through a lot, too. I'm hoping and praying that this biopsy will show something because my health insurance will run out in a month. I have BCBS temporary insurance because I had just started a new job, and the insurance was intended to hold me over until I got my health insurance through that job. Well, sadly, I was let go after only one week on that job because of my need to run back-and-forth to the bathroom. They said they needed someone who could be there "100% of the time, all the time". Unfortunately, the state I live in is an "At-Will" state which means they can hire and fire as they wish.
I'm currently receiving Unemployment Insurance until I can find the right position. I got really lucky that I was even approved for it.
My boyfriend and I are really only here until he finishes school, and then we'll be moving back to the Southeast. He was supposed to finish this past May, but was in a bad motorcycle accident (a lady hit him head-on), so it will be a few more months until he's finished.
Anyway, the loss of health insurance is going to be the biggest stickler. I told my GI Doc about it, so he's very aware about my desire to diagnose quickly and begin treatment, but if this biopsy shows nothing, I'm not sure how willing he'll be to continue with further tests. ale:

 

[David]

Hi Sarah and welcome to the community! Wow, you poor thing, you've been through so much I'm so sorry. Do you have a copy of the CT scan report? I'd love to know WHERE in the intestines the Crohns' was seen as not everywhere is viewed by a colonoscopy or endoscopy.

Anyway, here's my GUESS what's going on, at least in part:

Based upon your symptoms, I belief you have reduced intestinal motility for some reason which is leading to small intestine bacterial overgrowth (read that). That small intestine bacterial overgrowth is then sucking up vitamins and minerals for their greedy selves which is causing you additional symptoms due to deficiencies as you're not getting the nutrients. About 3/4 of your symptoms can be explained by this, from the rosacea to the fatigue.

The question is, what is causing the reduced intestinal motility?

An endocrine disorder? Certainly possible. Here's some though this paper is heavy reading, sorry. Vitamin B12 deficiency due to pernicious anemia? Could be. Inflammatory Bowel Disease and related complications? Also possible. And of course there's other causes.

Some suggestions for tests that might be worth discussing with your doctor:

1. Test for small intestine bacterial overgrowth although those antibiotics you just took might throw this off.

2. Test for vitamin B12 deficiency.

3. Have them utilize a capsule endoscopy to see the rest of your intestines they haven't viewed previously.

4. Be seen by an endocrinologist if they suspect that you do have decreased intestinal motility and an endocrine disorder might be the cause. As you've had issues since day one, this is an interesting option for sure.

Be sure to connect with our other members in the Undiagnosed Club. They're a great bunch. We're here for you!

 

[Crohnie86]

Hi David!
I actually just received a call from my GI Doctor's Nurse. She was calling to let me know my biopsy results from my Colonoscopy came back completely normal. She said there were absolutely no signs of inflammation.
It's bad news to me, because it just means more tests and more medical bills.

It's funny you mention seeing an Endocrinologist. A few days ago I woke up with severe inner ear pain. I went to a MinuteClinic, and they said I have a middle and outer ear infection in my left ear, and an outer ear infection in my right ear. They were incredibly thorough in their examination and she said my thyroid was enlarged. She seemed to actually be a little concerned about it, and said I should make an appointment to see an Endocrinologist as soon as possible.
This weekend, a family member came into town. He's studied Medicine in the past, and said there must be a reason for my infections as well. I've had yeast infections and candida (thrush) in the mouth for almost my entire life off and on. The antibiotics certainly arent helping, because I have another yeast infection, the thrush is worse, and I have a bladder infection on top of the ear infection I got a few days back.

It literally feels like my body is fighting against me. If the fatigue isnt from my illness, its at least from the stress

 

[Crohnie86]

Hi Sarah and welcome to the community! Wow, you poor thing, you've been through so much I'm so sorry. Do you have a copy of the CT scan report? I'd love to know WHERE in the intestines the Crohns' was seen as not everywhere is viewed by a colonoscopy or endoscopy.

I actually do have a copy! The report isnt very specific, but it does say there is inflammation of the small intestine and colon. The ER Doctor who saw me (a Doctor of Osteopathy) said that I went to the ER at just the right time, because the inflammation can come and go. He sent me home with paperwork describing Colitis, but nothing with the word Crohns on it. He explained that he couldnt diagnose me, but that my GI Doctor could with a Colonoscopy. Now that the Colonoscopy came back normal, I'm thinking I may speak with an Endocrinologist next, and perhaps an Immunologist.

 

[rafamia]

Hi there,

I'm sorry you are going through so much... Don't let these doctors tell you it's all in your head. It's not. You know your body better than anyone. Keep trying to find a doctor who will listen to you and who will want to investigate further to find your diagnosis. Once you have a diagnosis, try to apply for Disability benefits. The good thing about that is that you would also qualify for Medicare benefits.

take care,

rafa

 

[Crohnie86]

Hi there,

I'm sorry you are going through so much... Don't let these doctors tell you it's all in your head. It's not. You know your body better than anyone. Keep trying to find a doctor who will listen to you and who will want to investigate further to find your diagnosis. Once you have a diagnosis, try to apply for Disability benefits. The good thing about that is that you would also qualify for Medicare benefits.

take care,

rafa

You're right! They tried telling me that for years. I cant tell you how many anti-depressants I tried. They only seemed to make me moody and weird :facepalm:

I decided I wasnt going to continue messing with the chemical balance of my brain, and that instead I would try to get to the real source of the problem.

Sadly, Doctors dont like doing that. They like taking your money, and medicating you.