Crohn's Disease Forum » Your Story » Going to GI doc first time, really anxious, advice needed

07-07-2014, 09:24 AM   #1
Join Date: Jul 2014
Location: Greenville, South Carolina
Going to GI doc first time, really anxious, advice needed

Ok, I've been having GI issues for a long while. Im 37 and female, never had kids. Generally it was constipation or diarrhea one or the other all the time. It used to be constipation for days and days followed by horrible diarrhea, and the cycle started over. This started about 8 or 9 years ago. My dad and his mom both have the same issue, and my mom did some. We chalked it up to IBS and when I passed blood a couple of times, hemorrhoids. My family doc wasn't really stressed about it because of my family history (we all see him). Then about 6 years ago, I started having abdominal pain and mucus in my stool. Everything went through my system SO fast, and lots of undigested food.... I was sent for an ultrasound to check for gallbladder, it was clear (thank God) The pain, which was in my upper left quadrant, continued when I was constipated especially, and occasionally would be on my right side too right under my ribs. So they sent me for a CT with contrast a year later. They said I was just constipated and that where my appendix once was (lower right quadrant) there was either a surgical clip or calcium deposit, likely a calcium deposit. My family doc said IBS again...

Fast Forward a few years, and I have bouts of horrible watery diarrhea for days followed by being constipated after I finally take something for it. But I rarely have a normal stool. Its generally just diarrhea or just soft. Im not losing weight, and my family doc started saying he thought it might be Crohn's or colitis but my blood work looked good and he wasn't very worried. He suggested avoiding foods I know set me off, and more fiber. I was told if it was IBS mixed there was nothing to be done, and if it gets to be one more than the other come back and we'll address it. This all comes and goes with stress making it worse. And the most fun is the "rapid emptying" I experience almost every time I eat. Within 20 minutes Im overwhelmed by cramping and the urgent need to "go".

Two weeks or so ago, after a long bout with the watery runs again, I had a little blood when I wiped and so I went to urgent care. It was going to be three or four weeks to see my doc and I wanted something done while Im having issues. So the doc at urgent care ran blood work and a occult test and said there was blood in my stool, (no shocker there) and although everything else was great in my CBC, my white count was just slightly elevated. She said she wasn't worried that I had anything really horrible wrong because I've had symptoms so long, but she was leaning towards colitis or Crohns.

Im scheduled for the GI doc on Wednesday. I don't know what to expect. My younger sister is a Nurse Practitioner and worked for a little while at a GI clinic. She has her money on Crohns because of the white count. To be honest, Im a little scared. I have a cousin with Crohns and she had all kinds of issues growing up, and my family doc said his brother died from complications from colitis. Ive made diet changes over the years to see what affects me. Everything from gluten free to dairy free and there has been no real change. I have found lunch meat and processed foods makes me really sick, we think popcorn and seeds triggered the last bout, and beef makes my side hurt. Pork seems to make my belly feel better, go figure. Fish and Chicken dont seem to matter one way or the other. Now some veggies simply pass undigested entirely, while others do not. Occasionally I pass everything from a meal undigested. I haven't lost any weight, except water weight when I have a long bout...

Anyhow, Im scared to death. I don't know what to expect and I don't know what they are going to tell me is wrong. crohns is the word they have bounced around and Im not sure what that will mean for me if I do indeed have it. Any advice would be great.
07-07-2014, 09:39 AM   #2
Senior Member
Don't be worried and try not to do too much online searching. I expect before diagnosis, your GI will schedule tests. For some of us, food is not a trigger. Even if you do get a diagnosis, you need to remember that most of us on the forum tend to be here because we are not well. Further treatment is so much better than when I was diagnosed 30 years ago. Try and relax. At the end of the day, a diagnosis of crohns or colitis doesn't mean that your life will change significantly.
07-07-2014, 06:42 PM   #3
Senior Member
FrozenGirl's Avatar
My first visit to my GI was a colonoscopy, nothing like that to get familiar, lol. Your GI will prob want some general blood work (again ), a fecal calprotein test (stool test for inflammation in the gi tract) and potentially a colonoscopy. Don't get to worked up. I have a great GI that I completely trust and I am so glad I got over my fear to go. If it is crohns it is not the end of the world. There are lots of options for treatments.
Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
07-07-2014, 06:55 PM   #4
Join Date: Mar 2014
Location: Springfield, Oregon

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Your story isn't all that uncommon, Crohn's is often fobbed off by bad, ignorant doctors as "just IBS" because for many, there are few symptoms to put on a chart unless they do a colonoscopy (something you should expect) sometimes even those are clean while you suffer and rot. The fact you have a family history of IBD and symptoms that could be indicative of IBD means your GP was massively negligent and is completely useless - get a new one.

They'll likely ask for a new CBC panel, another occult blood test for your stool, and a fecal calprotein test. If those are inconclusive you need to push for a colonoscopy so they can see the damage in real time if you have it. It's the best way to see if you have IBD, but even if it comes back negative it's still quite possible you have it. Many people have symptoms while their intestines rot quietly enough to avoid coming up on tests until the damage is done.

This is a very good time to get diagnosed with Crohn's Disease - many powerful new therapies and drugs are coming onto the market and helping people get their lives back in a major way. You could easily end up simply giving yourself an injection once or twice a month for the rest of your life to control it and making regular visits to your GI.

And what part of history did you study? It's a major hobby of mine.
07-07-2014, 07:33 PM   #5
Join Date: Jul 2014
Location: Greenville, South Carolina
One of my BAs is in history. My area of focus then was the war between the states and local history specifically rev war and the healing springs of the area. Currently my research projects are one about the town that employs me, and a unit history from my grandfathers unit in WWII (17th airborne division)

I work with numbers but history is my passion. :-)
07-07-2014, 07:44 PM   #6
Senior Member
Ali29's Avatar
Join Date: Mar 2014
Location: Texas

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Good luck on your first GI visit, hopefully the path to your healing!!!
Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
07-07-2014, 09:28 PM   #7
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dave13's Avatar
Join Date: Dec 2013
Location: Maine

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Good luck to you.I really like my new GI.
07-07-2014, 11:10 PM   #8
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fozheart's Avatar
Join Date: Jul 2011
Location: Newport News, Virginia

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I am glad that you are going to see a GI doctor, and I hope that you get some answers, especially since your WBC is elevated. Good luck!

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