Crohn's Symptoms and Complications without a Diagnosis

[Lost&Painful]

Hi everyone,

I am writing in hopes that someone understands what I am going through and could possibly share their experience and outcomes. Thank you in advance for taking the time to read and offer support.

I am a 25 year old female with a life long history of chronic nausea, constipation, and severe abdominal pain. In the last 6 years I have had two hospital stays, one for a bowl obstruction and one for a ruptured intra-abdominal abscess, for one week and two weeks respectively. Following the first hospital stay for the bowl obstruction, they released me from the hospital without further testing and diagnosed me with IBS. The second hospital stay occurred last year, and a colonoscopy and endoscopy were performed a few weeks after my release, both results were normal. The gastroenterologist said I have IBS and has since discontinued communication.

I spend about 98% of my days in a lot of pain and so nauseous that I can barely eat, I am so tired and am struggling with living this way. I am on IBS medications (which does not work) and the highest possible dose of Zofran. The only thing that helps the abdominal pain is opioids but I can not live my life on them. I don't want to wait for another complication to arise, because the last one almost killed me (ER MD said if I waited another day I would have died).

Based on any of your experiences, can you relate to this? Do I really have IBS or do I have CD in a location they can't see (ie. small intestine)? How long did it take for you be diagnosed? Do your symptoms match mine?

Sincerely,
Lost&Painful

 

[ronroush7]

Hi. I was diagnosed with Crohn's disease twenty eight years ago. Three or four years ago, they told me that i have ibs also. I was still having symptoms. So they tested me again and I was having a flare. I don't think you were treated fairly. I think you should ask for a second opinion or ask the current doctor to do a mri. I am not a doctor and i could be wrong but I think you have some form of ibd. Let us know how you are. It took probably a year or two for me to be diagnosed.

 

[Scipio]

My symptoms are milder than yours. But it certainly possible to have Crohn's in the small bowel where it cannot be seen via colonoscopy. I suggest you talk to a gastroenterologist about getting either an MRI or capsule camera endoscopy to get a better assessment of the small bowel. After many months of uncertainty my Crohn's was finally diagnosed by capsule camera endoscopy.

 

[poppets mum]

My daughter has a very similar story and three colonoscopies just show mild inflammation that drs say is ibd then change their minds. Drives me crazy to see her in constant pain, using ineffective ibs treatments.

 

[Lady Organic]

There are gastroenterologists who specialize in IBD. My 2 GIs since diagnosis have been IBD specialists. You could try to find one in your region for another opinion.

 

[Lost&Painful]

Thank you all so much for your kind words, support, and advice! I am so grateful!

 

[Lindsay loo]

Thank you all so much for your kind words, support, and advice! I am so grateful!

Hi! I’ve also had three hospital admissions over the last twenty years and was also told ibs. I had a ct scan three years ago to look at my bladder after constant uti and results came back that my bladder was fine but illeocaecal valve indicative of Crohn's. I had a pill camera and it was chronhns. My first symptoms were heartburn, nausea and I was convinced initially that it was a gastric problem but now think it was problems lower down causing a slowing down of gastric emptying. My first admission was 1999. Diagnosis of Crohn's 2016. I would go back to your gp and tell them you can’t cope anymore. Good luck and hope you have some success

 

[Jabee]

It certainly isn’t normal to have bowel obstructions or intra-abdominal abscesses. I am appalled that you were released from the hospital without a real diagnosis. Please do get a second (or third and fourth) opinion; you definitely need a thorough exam to get some actual answers. IBS doesn’t cause obstructions or abscesses.