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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Scared and hopeless, abandoned by PCP

04-30-2017, 04:13 PM   #1
Join Date: Feb 2017
Location: Maine
Scared and hopeless, abandoned by PCP

I have had off and on again stomach sensitivities my whole life. Constipation as a kid. Trapped gas as a teen. C-diff after having my wisdom teeth pulled. Anal fissure. And occasional D when drinking or eating spicy food. As annoying as it gets, its been mostly tolerable fortunately.

This past November, I was eating gluten and dairy free, and intermittent fasting (going 24-40 simultaneous hours a week with just water) to get into better shape for the winter. Usually my stomach trouble is worse in the winter so I thought this was a good preemptive strike. However, when I would break the fasts on Monday afternoons, I would instantly run to the bathroom with either explosive D or vomiting. So I could that out.

Around mid Dec, I started to experience loud stomach noises and gas breaking down in my lower stomach/pelvis but with trouble exiting. Sometimes my rectum would just open and close and open and close again with this weird sensation that I had defecated. And when I would go to the bathroom, even if it was a standard stool, it would shoot out with lots of trapped gas behind it, always causing a mess and lots of splash back.

After a few days of this, I began to experience a stabbing and excruciating cramp-like pain in my mid to lower right abdomen. Now weird side story, when I was 19 I had this same cramp for a few days (no other symptoms) and drove myself to an ER, where they gave me a muscle relaxant and scheduled me for a Colonoscopy which came back normal. Maybe experienced this cramp a couple times since but I always thought it was a pulled muscle from jogging and never gave it a second thought.

Through this past Jan and Feb my symptoms got worse and went from cramp and trapped gas, to diarrhea with lots of mucus, mucus discharge basically everytime I wiped, something was on the paper.

I also started to have this weird BM where a large amount of greasy yellow stool would come out no problem, but then the last little bit takes me about an extra hour to gradually push out, with lots of mucus. For about 4 hours after I have a BM I still have a sensation that there is more there right on the rectum ready to come out. It leaves me with tons of pain and basically I have been stuck in bed since.

When my insurance kicked in (March 1st) took myself to my PCP. He suspected Crohn's and sent me to a Colon-rectal Surgeon who gave me a colonoscopy and MRI which both came back normal. He didn't get into the Terminal ileum with either though. During this whole time I experimented with FODMAPS and restricted diets to no relief.

He basically wrote it off as IBS and gave me Bentyl to help with the cramping, which has given me some relief and basically has allowed me to at least get out of my apartment a couple hours a day, and gain some weight back. However, my BM's haven't changed and the pain hasn't really gone away.

I decided at this point to take matters into my own hands and scheduled an appointment with a GI which took 2 months to get into. Finally got in a week ago, and they took a stool sample and blood which all came back normal. Now I am being scheduled for a CT Scan.

From what I have read, getting a diagnosis with stomach issues can take years, and basically the stomach is a mystery to docs. I have never had to go out of my way so much as I have now to get help. I am in the process of finding a new PCP who doesn't just write me off when things get complicated. And I have had to call daily to make appointments as my GI seemed nice and concerned, but hasn't even set up a follow through.

I guess I am scared, lonely, and frightened that this will never resolve itself, and as summer is around the corner, I am scared I will be stuck inside without a job and no hope of finding any answers. The waiting game for appointments is ridiculous. And at this point my family and friends don't want to hear about it, and probably think I am making it up.

I have been going to therapy which helps a lot, bc it feels like she's on my side, but as for everything else, I feel hopeless.

Thank you for reading this. Is there anything I should be asking my GI for? I SIBO test? Or anything I should be looking for maybe they aren't considering. I am so desperate to have some sort of life back.
04-30-2017, 04:23 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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I am no expert but i would start by asking for a cokonoscopy. Keep pushing until you get an answer. I wish you the best.

Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
04-30-2017, 04:33 PM   #3
Join Date: Feb 2017
Location: Maine
I am no expert but i would start by asking for a cokonoscopy. Keep pushing until you get an answer. I wish you the best.
Thank you. I had a colonoscopy and MRI both came back normal, but neither of them got into my ileum
04-30-2017, 04:42 PM   #4
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I would think they would want to get into the ileum.
05-01-2017, 06:44 PM   #5
my little penguin
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Join Date: Apr 2012

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Mri images your small intestine including your terminal ileum
It's imaging
A colonoscopy would go to your terminal

If there was difficulty the doctor would have noted why
Getting a copy of the medical report might be helpful

Aside from imaging you would need to follow your GI leads

Sometimes what is going on isn't what we think it is

Many docs thought Ds had one thing
All tests were geared towards this

Turns out he had Crohns
Found out by accident and shocked even the GI
DS - -Crohn's -Stelara
05-02-2017, 03:23 PM   #6
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tots's Avatar
Join Date: Feb 2012
Location: Austin, Texas

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My CD only shows on a CT scan and with a small bowel series. I am guessing if it shows on a CT it would show on an MRi although as I have never had one I cant say from experience. My Dr cant reach the part of the small bowel where my CD with a colonoscopy where the other tests show it.

If you think something more is wrong with you chances are, there are. Remember you are your own best advocate. My original Dr said sometimes CD is a diagnosis of elimination. Meaning they have ruled out everything else. I hope you get some answers soon, feel better


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!

Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
05-02-2017, 04:32 PM   #7
Isabelly's Avatar
Join Date: May 2017
Location: Minneapolis, Minnesota
The waiting game for appointments is ridiculous.
If you're still having troubles with appointments, my advice is to find a gastroenterology-specialist in your area. I was having the same problems you are with getting appointments, so I found my own doctor.

I can see under your profile that you're in Maine (is that creepy to know?), so I just Google-searched "gastroenterologist in Maine," and there's one with a five star rating named Portland Gastroenterology Center in Portland, Maine. Obviously I don't know where you live, but maybe check that one out? I found my gastro center through a Google search (they were also rated five stars) and they've been absolutely great. I called them on a Monday and was scheduled for an appointment that afternoon, and then a colonoscopy that Friday. I sincerely hope this helps!

**P.S. I don't know much about CT scans or anything of those things, so I tried to help in a way that I can. I hope you find out what's going on!

EDIT: Plus, a gastro-specialist will definitely take you seriously and listen to you, whereas--in my experience--sometimes other doctors will try to get you in and out as quickly as possible (not always their fault, they're given like, 15 minutes with each patient).

Last edited by Isabelly; 05-02-2017 at 04:50 PM.
05-02-2017, 11:12 PM   #8
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Jabee's Avatar
Join Date: Oct 2016
Location: Massachusetts

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The crohn's always shows up on CT scans for me. It's all in the small intestine so they've only seen it with a scope when it was in my duodenum. Should be very helpful in figuring out what might be going on.

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