• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

NEW - Doc says HAVE Crohn's, NEED second opinion

Hi,

My name is Elena. I'm 23 and I live in LA. I'm going to get down to my frustrating, long story to those who will listen.

My problems started when I was 19. It was always difficult for me to travel because it would make bowel movements extremely difficult--probably from anxiety. I got what I thought was a hemorrhoid from straining and began to suffer from then on. I never had diarrhea, except like the normal times(when had stomach flu, food poisoning, etc.) But going to the bathroom hurt even from normal bowel movements. I WISH I had diarrhea sometimes.

At 21 I went to colorectal surgeon, who told me I have a fissure, and gave me creams and told me what to do to try to heal it naturally. Baths, fiber, certain diets, etc. She thought I had a hemorrhoid too, and so by doing these things, it would hopefully relax, and so would my sphincter, and the fissure would heal too, since they don't heal by lack of blood supply.

The problem later worsens, doesn't heal, still hard to go to bathroom. I go to another surgeon (albiet not a specialist about colorectum) who performs a rectal exam, agrees with the fissures, then performs an rectal exam under anesthesia (I went into this thinking I could remove hemorrhoids) and says that I have more fissures and they are not hemorrhoids but skin tags, which go hand in hand with fissures. Okay. All right. However, fissures don't necessarily mean Crohn's--so I have researched--and the number one reason for them is constipation. Too much straining tears your bu**hole.

Next, I get a colonoscopy from a GI and get a biopsy, which finds inflammation. The GI is then sure I have Crohn's. Just a month before the colonoscopy, I had an ulcer and hiatal hernia (confirmed by an endoscopy but was healing, now better), most likely from taking too much ibuprofen from inflamed elbows--from an overuse injury because I had begun working out my triceps with a personal trainer. I have a sensitive stomach, always have. Of course, it seems to me the second surgeon was too eager to diagnose (she was young), said this also might be Crohn's. I think BULL****. My stomach is better now. But heartburn runs in my family. Crohn's does not, nor diarrhea or inability to hold stool. I was suggested to take two pills of ibuprofen or motrin every 6 hours, nonstop, by a general doctor (a shitty one I might add), and could sue him if only he prescribed me the ibuprofen, but alas he did not. That's another story.

I took blood work as well which were AMBIGUOUS, sent all the way to california, where I am sure everyone's blood work is done. My father, a physician as well, compared my blood work in other forums and found similar bull****, ambigious results. I can find these results if whoever replies is interested in helping me.

I do not have rectal bleeding, only occasionally from the fissures, so I am not anemic. All of my other blood work is normal. I do not have major cramping every time I eat, only sometimes, but it seems normal, nor do I ever throw up. I never had major weight loss. I do not have strange bloating, only during normal times of the months. Nor, do I go to the bathroom 50 times a day, or ever had.

When I spoke with the second surgeon about this matter, told her I didn't have diarrhea, she said, "Oh you may start now then." I was absolutely appalled by her answer. I may start? Because NOW I have Crohn's. No. I think not, B****. Sometimes I wish I had diarrhea because I get constipated, but I do not. I apologize by my words, but I am pissed.

Last thing: I have PTSD and major anxiety, always had. Everyone knows that anxiety is linked with ulcers, or worsens them. And for many people, when they are anxious, their stomachs hurt, as does mine a lot because anxiety is a daily thing for me, and they either sh** their brains out, or get constipated. I am the latter. However, the doctors did not consider this, my mental health, nor how my butt problems began when I was 19, after straining myself. This pisses me off.

I am looking for another doctor for a second opinion, someone who is an absolute specialist!!! Considering how no one knows how Crohn's starts, nor is there a cure, it's hard to put faith into fast diagnoses like mine. I cannot start taking major meds like Humira or Remicade without knowing 100 percent.

What if I have an allergy? Or something else? Or my ulcers in my intestines are still from the ibuprophen, just healing? I don't double up in pain.

The meds I take are:
Omeprazole
Xanax (for anxiety)

A friend of mine who was also diagnosed with an anxiety disorder was once told by a doc that she too had Crohn's--she would have major diarrhea when anxious, and would go a lot in a day, and still does. But it was just anxiety!!!! What the f***?

Clearly frustration and fury is prevalent in a lot people's stories.

Thanks for reading and listening. Any one have thoughts?

Please let me know.

~Elena
 
Last edited:

DJW

Forum Monitor
Hi Elena and welcome. I'd be pissed if I was in your shoes.

I think you need a second opinion. Don't blame you at all for not wanting to start biological drugs without 100% certainty you have crohns.

Sending you my support. I hope you get answers soon.
 

David

Co-Founder
Location
Naples, Florida
Welcome to the community. I'm sorry to hear about all the trouble you've been having :(

Have any doctors ever done a fecal calprotectin test on you?

All my best to you.
 
Hello and welcome to the forum. I agree on a second opinion. Not everybody that suffers from crohn's have bleeding or loose stools. Some people with this disease have constipation and not all the symptoms apply to all. I am not saying you have Crohn's just that not everybody follows the same rule. Good luck with your second opinion and let us know how it goes.
 
Top