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Crohn's Disease Forum » Your Story » Sick of being sick :(


11-15-2017, 11:56 AM   #1
Erin13
 
Join Date: Nov 2017
Location: Salisbury, Massachusetts
Sick of being sick :(

Hi everyone,

My name is Erin and I'm new to the community. I do not currently have a diagnosis but I would like to share my story with folks that understand what I'm going through. No one in my personal life can relate and I feel all alone in this journey. I appreciate anyone who takes the time to read and share. I'm really sorry if it's too long but I just need to vent.

I'm 37(f) in Massachusetts and have a lengthy history of being ill. It hasn't all been GI-related and I'll try to keep it relatively brief to spare you the saga that is my life, lol. Since I was about 9 y/o I have had bouts of extreme urgency in needing to use the restroom after eating (usually around 20 minutes after food). I would have horrible cramping, would shake, sweat and cry if I couldn't get to the toilet fast enough to relieve myself of the diarrhea. These episodes were not serious or frequent enough to my parents to be investigated at the time, I guess.

Fast forward a few years to high school. My abdominal issues waxed and waned over the years but my mum finally got sick of hearing me complain and took me to our crusty old doctor. This guy was a jerk but finally agreed to run some tests. At the time the most prominent symptom was an unrelenting cramping in my middle/upper right abdomen. Upper endoscopy and barium enema were done and showed nothing to my knowledge. Problem continued but I'd already been living with my symptoms so long that I just grew to deal with them as a normal part of life.

College rolls around and I get violently ill one weekend and come home to go to the ER. The worst abdominal pain of my life and non-stop bloody diarrhea. This was the first time I suspected Crohn's (my father had the disease and I was very familiar with his symptoms) and they tell me they ran a "Crohn's test" (which could have only been some sort of blood or stool tests bc I had no imaging) but it was negative. I was so sick and pretty medically-naive at the time so I didn't question it, nor do I even know what they specifically ran. Docs told me I had an E. coli infection and pretty soon the CDC is calling me with all sorts of questions. No meds and I'm sent on my way home.

Years go by and my pain and diarrhea issue remain but again, I deal. Docs check my gallbladder about 5 times (quick note: yes, I'm overweight, but if I tell you I have repeatedly had my gallbladder checked with not even a hint of a problem, please listen!) and find zip. My dad passed in 2004 having worked in the health field for a few years, I asked my PCP for a work-up and to include a C-reactive Protein level on my labs. The CRP came back so completely off the charts (I think it was ~10 times the high end of the normal range) but my doc said not to worry, so I didn't.

2013 starts a two-year journey of being very ill, but GI problems were the least of my worries at first. To make it super quick, I was diagnosed with diabetes then ended up with mRSA pneumonia that developed into ARDS and septic shock that put me in a coma for a few weeks. Had I not driven to the hospital in Boston the night I did, I would have literally died in my sleep. I was discharged after about a month and a half and my GI problems were terrible (unrelenting painful, urgent diarrhea for 5 months) and I had a few more episodes of pneumonia over the next few months. Both issues mostly resolve and I carry on.

Ok, so let's talk present day. Thank you for following along so far. About 3 months ago my GI symptoms knocked me flat on my a$$. I have had constant pain in my right abdomen (still middle to upper after all these years) and cannot keep food in my body. It goes right through me within minutes. No antidiarrheal meds work. I am currently losing at least a pound per day and I'm so tired all the time. I saw my PCP and bloodwork once again showed a CRP that's off the charts and my IGA is astronomical for the third time. I finally got a referral for GI and met with her last week. Given my symptoms, family history and some lab values she strongly suspects Crohn's. Waiting for a fecal calprotectin result and I have an upper endoscopy and colonoscopy the week after Thanksgiving.

I'm concerned that the tests won't show anything and I'll be left dealing with this on my own with no direction to head in. It's really kind of depressing to constantly be sick in one way or another. I don't like talking about it with my family/friends so much because I feel like they don't want to hear about me being ill all the time. I get it though; who wants to hear that year after year for almost 40 years?

Thanks again for reading. I feel so isolated and I'm glad I found the forum so I can speak with others who can understand my situation.

Take care,
Erin
11-15-2017, 12:39 PM   #2
Squirrel#1
 
Join Date: Sep 2017
Location: Abilene, Texas
Hi everyone,

My name is Erin and I'm new to the community. I do not currently have a diagnosis but I would like to share my story with folks that understand what I'm going through. No one in my personal life can relate and I feel all alone in this journey. I appreciate anyone who takes the time to read and share. I'm really sorry if it's too long but I just need to vent.

I'm 37(f) in Massachusetts and have a lengthy history of being ill. It hasn't all been GI-related and I'll try to keep it relatively brief to spare you the saga that is my life, lol. Since I was about 9 y/o I have had bouts of extreme urgency in needing to use the restroom after eating (usually around 20 minutes after food). I would have horrible cramping, would shake, sweat and cry if I couldn't get to the toilet fast enough to relieve myself of the diarrhea. These episodes were not serious or frequent enough to my parents to be investigated at the time, I guess.

Fast forward a few years to high school. My abdominal issues waxed and waned over the years but my mum finally got sick of hearing me complain and took me to our crusty old doctor. This guy was a jerk but finally agreed to run some tests. At the time the most prominent symptom was an unrelenting cramping in my middle/upper right abdomen. Upper endoscopy and barium enema were done and showed nothing to my knowledge. Problem continued but I'd already been living with my symptoms so long that I just grew to deal with them as a normal part of life.

College rolls around and I get violently ill one weekend and come home to go to the ER. The worst abdominal pain of my life and non-stop bloody diarrhea. This was the first time I suspected Crohn's (my father had the disease and I was very familiar with his symptoms) and they tell me they ran a "Crohn's test" (which could have only been some sort of blood or stool tests bc I had no imaging) but it was negative. I was so sick and pretty medically-naive at the time so I didn't question it, nor do I even know what they specifically ran. Docs told me I had an E. coli infection and pretty soon the CDC is calling me with all sorts of questions. No meds and I'm sent on my way home.

Years go by and my pain and diarrhea issue remain but again, I deal. Docs check my gallbladder about 5 times (quick note: yes, I'm overweight, but if I tell you I have repeatedly had my gallbladder checked with not even a hint of a problem, please listen!) and find zip. My dad passed in 2004 having worked in the health field for a few years, I asked my PCP for a work-up and to include a C-reactive Protein level on my labs. The CRP came back so completely off the charts (I think it was ~10 times the high end of the normal range) but my doc said not to worry, so I didn't.

2013 starts a two-year journey of being very ill, but GI problems were the least of my worries at first. To make it super quick, I was diagnosed with diabetes then ended up with mRSA pneumonia that developed into ARDS and septic shock that put me in a coma for a few weeks. Had I not driven to the hospital in Boston the night I did, I would have literally died in my sleep. I was discharged after about a month and a half and my GI problems were terrible (unrelenting painful, urgent diarrhea for 5 months) and I had a few more episodes of pneumonia over the next few months. Both issues mostly resolve and I carry on.

Ok, so let's talk present day. Thank you for following along so far. About 3 months ago my GI symptoms knocked me flat on my a$$. I have had constant pain in my right abdomen (still middle to upper after all these years) and cannot keep food in my body. It goes right through me within minutes. No antidiarrheal meds work. I am currently losing at least a pound per day and I'm so tired all the time. I saw my PCP and bloodwork once again showed a CRP that's off the charts and my IGA is astronomical for the third time. I finally got a referral for GI and met with her last week. Given my symptoms, family history and some lab values she strongly suspects Crohn's. Waiting for a fecal calprotectin result and I have an upper endoscopy and colonoscopy the week after Thanksgiving.

I'm concerned that the tests won't show anything and I'll be left dealing with this on my own with no direction to head in. It's really kind of depressing to constantly be sick in one way or another. I don't like talking about it with my family/friends so much because I feel like they don't want to hear about me being ill all the time. I get it though; who wants to hear that year after year for almost 40 years?

Thanks again for reading. I feel so isolated and I'm glad I found the forum so I can speak with others who can understand my situation.

Take care,
Erin
I went through simular back ground myself. I was told as a child I had a nervous stomach. I lived on donnatol. I went into remission for several years. Every time I would have what I now know is a Crohn's flare, the ER or Dr would say it was either a virus or stress. I started doubting the virus part because no one around me would get it. I lost my father unexpectedly and finally got a divorce from a very abusive umm man more like SATAN. I figured it was stress. However the weight kept dropping and energy levels dropping. The vomiting and diarrhoea wouldn't stop. I kept going to the er about every 3 weeks. FINALLY got admitted and they ran labs and both scopes. Came back severe Crohn's. I suggest if you ever have any doubts about what the drs say please get a 2nd opinion. You have to be diligent, aggressive or even a raging you KNOW. Do not ever believe things are normal! I'm praying for you!! Best of luck.

11-15-2017, 01:19 PM   #3
eleanor_rigby
Senior Member
 
Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

My Support Groups:
I canít believe you havenít had a colonoscopy before now, especially with your dad. I strongly suspect you have Crohnís too. You have been unnecessarily messed around for years. It sounds like you have finally found a GI where your history has clicked for her. I think these tests are going to reveal something just hold tight.
11-16-2017, 12:21 AM   #4
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Hi Erin and welcome to the community. I can understand your concerns I think you'll find the folks on this forum can fill the role of listener that many of us need.

I wish you all the best.
__________________
It's good to be back
11-22-2017, 09:56 AM   #5
Erin13
 
Join Date: Nov 2017
Location: Salisbury, Massachusetts
Thanks for the support, folks. Here's a quick update/vent.

Had C. diff/fecal calprotectin tests done; no C. diff (which I knew - I'd recognize it a mile away) and my FC is 16. Colonoscopy/endoscopy scheduled for Monday after Thanksgiving.

Here's where I need to vent. The day after my original post my symptoms all but disappeared. I feel like maybe I waited too long to see the MD and now that I'm feeling a little better, my tests aren't going to accurately show what I've been going through. I still have cramping but it's definitely less severe and I'm able to keep food in. In fact, I've gained about 7 pounds in the week. :/

Has anyone experienced anything similar? Any tips on what to tell the MD so I don't seem like a raging hypochondriac? I feel like I'm not going to be taken as seriously now that I have had a little break from my symptoms.
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