Possible Crohn’s disease

[K_Nicole14]

Hi everyone!
I am still undiagnosed but was told that I may be early I the stages of Crohn’s disease. I will try to summarize my story here. About 2 years ago I started having episodes of diarrhea and abdominal pain that would last about 2-3 weeks and would occur every couple months. I just assumed I was getting viral GI illnesses or food poisoning but the frequency was a little concerning. Then last year around thanksgiving I developed abdominal pain and diarrhea that never went away. I eventually saw a GI doctor about a month into it when I started losing weight. They did some labs and said everything was normal and it could still just be a viral illness and to come back in a month if not gone. So I returned a month later with more weight loss and now some blood in the stool. Had a colonoscopy and upper endoscopy that came back clear. Then had a CT abdomen/pelvis that found a blood clot in my portal vein. Saw vascular medicine and was started on a blood thinner for the clot. Vascular medicine doctor told me that these clots are almost exclusively found in people with liver disease or IBD so that I likely have and underlying IBD since my liver is fine. Then had an MRE that showed active inflammation in the terminal ileum with wall thickening. This was not seen on my colonoscopy. Also had a HIDA scan to check the gall bladder and breath test for SIBO which were both negative. Then two months later had a capsule study done which didn’t show anything in the ileum but showed some thickened areas and possible polyp in the jejunum. I was trialed on 2 months of budesonide which helped dramatically. Diarrhea went away, most of the abdominal pain went away and I gained back almost 10 of the 20 pounds I lost. That lasted for about 2-3 weeks after stopping the budesonide and now my symptoms have been gradually returning. Then had a push enteroscopy done after budesonide and the only thing they found was some reactive epithelial chages in the duodenum. At my follow up the other day they basically said they don’t know for sure what’s going on and it could be the beginning stages of Crohn’s since I responded to steroids and had inflammation on the MRE but they won’t treat it without a for sure diagnosis. They said if my symptoms worsen they would repeat testing and see if anything comes up then. I’m considering getting a second opinion as I am at a loss of what to do at this point. It seems insane to me to just wait and see if things get worse. We also don’t know what to do with the blood thinner because vascular said I can come off of it since I was treated for 6 months IF the inflammation is gone. I have also tried diet changes such as no dairy, no gluten, pre and probiotics without improvement. We discussed a low fodmap diet but no one feels comfortable with that right now since I have lost so much weight. Has anyone else had any similar experiences?

 

[Scipio]

My case was similar in some ways. Like you I had occasional diarrhea and a few instances of bloody diarrhea. I also has occasional unexplained fevers that each lasted a day. But my main symptoms were anemia and right lower quadrant abdominal pain.

X-rays showed bowel wall thickening in the terminal ileal region, but both upper and lower endoscopy studies were normal. My doc suspected Crohns. What finally led him to make a firm diagnosis was a capsule camera endoscopy procedure that showed a few aphthous ulcers in the terminal ileum. That was enough for him to make the call. I've been treated for Crohn's ever since and been been in remission thanks to Stelara for nearly 7 years now.

Your capsule camera endoscopy was abnormal but inconclusive. Maybe a repeat capsule study at some point might be informative - might pick up some small ulcers that were missed or not yet present the first time.

 

[my little penguin]

Get a second opinion
Scoping /imaging after steriods could be why thing are muddy .

Another thing to consider
Bechets
Can cause colitis /intestinal inflammation and clots etc….
Rheumatology treats Bechets but it’s rare

 

[my little penguin]

Wanted to add spondyloarthritis can cause sub clinical crohns -so it causes issues but not enough to call it crohns
Second opinions are needed but looking at other specialists might uncover the cause

 

[K_Nicole14]

Get a second opinion
Scoping /imaging after steriods could be why thing are muddy .

Another thing to consider
Bechets
Can cause colitis /intestinal inflammation and clots etc….
Rheumatology treats Bechets but it’s rare

Yeah I was wondering if taking the budesonide maybe led to my push enteroscopy coming up clean. I didn’t think of other autoimmune diseases causing the GI symptoms. I’ll bring this up with my doctor as well. I did schedule an appointment for a second opinion for early December so we will see what he says. Thanks for the advice!

 

[K_Nicole14]

My case was similar in some ways. Like you I had occasional diarrhea and a few instances of bloody diarrhea. I also has occasional unexplained fevers that each lasted a day. But my main symptoms were anemia and right lower quadrant abdominal pain.

X-rays showed bowel wall thickening in the terminal ileal region, but both upper and lower endoscopy studies were normal. My doc suspected Crohns. What finally led him to make a firm diagnosis was a capsule camera endoscopy procedure that showed a few aphthous ulcers in the terminal ileum. That was enough for him to make the call. I've been treated for Crohn's ever since and been been in remission thanks to Stelara for nearly 7 years now.

Your capsule camera endoscopy was abnormal but inconclusive. Maybe a repeat capsule study at some point might be informative - might pick up some small ulcers that were missed or not yet present the first time.

Glad to know it’s not just me with normal scopes after imaging showed something suspicious. I scheduled an appointment for a second opinion in early December so we will see what this doctor thinks about everything. Thanks for the help!

 

[Andersen007]

Your MRE results are consistent with what I had - I am diagnosed with mild Crohn's of my terminal ileum. But those findings are quite non-specific. Some questions:
1. What was / are your calpro results looking like?
2. Did they do ileocolonoscopy with biopsy? You mention colonoscopy initially before the steroids, did they actually check the terminal ileum, biopsy it, and found those biopsies without any sign of inflammation?

These 2 things helped aid my diagnosis as thankfully my symptoms and severity were, and still are, quite mild. I never had malabsorption, very little pain, no blood as far as I can tell except hemorrhoids, no CRP / ESR elevation or any issues as per bloodwork, no fatigue, no fevers, but I did have IBS-D like symptoms for like 10 years before the diagnosis getting worse by the end. Since diagnosis and adhering to a strict diet, even that is gone. However apart from my MRE showing slight thickening of TI, they also saw 2 small ulcers in terminal ileum for which the biopsy also showed chronic + active mild inflammation, and my calpro was also in the 700s. So those were telltale signs aiding the diagnosis back then.

 

[ronroush7]

Hi everyone!
I am still undiagnosed but was told that I may be early I the stages of Crohn’s disease. I will try to summarize my story here. About 2 years ago I started having episodes of diarrhea and abdominal pain that would last about 2-3 weeks and would occur every couple months. I just assumed I was getting viral GI illnesses or food poisoning but the frequency was a little concerning. Then last year around thanksgiving I developed abdominal pain and diarrhea that never went away. I eventually saw a GI doctor about a month into it when I started losing weight. They did some labs and said everything was normal and it could still just be a viral illness and to come back in a month if not gone. So I returned a month later with more weight loss and now some blood in the stool. Had a colonoscopy and upper endoscopy that came back clear. Then had a CT abdomen/pelvis that found a blood clot in my portal vein. Saw vascular medicine and was started on a blood thinner for the clot. Vascular medicine doctor told me that these clots are almost exclusively found in people with liver disease or IBD so that I likely have and underlying IBD since my liver is fine. Then had an MRE that showed active inflammation in the terminal ileum with wall thickening. This was not seen on my colonoscopy. Also had a HIDA scan to check the gall bladder and breath test for SIBO which were both negative. Then two months later had a capsule study done which didn’t show anything in the ileum but showed some thickened areas and possible polyp in the jejunum. I was trialed on 2 months of budesonide which helped dramatically. Diarrhea went away, most of the abdominal pain went away and I gained back almost 10 of the 20 pounds I lost. That lasted for about 2-3 weeks after stopping the budesonide and now my symptoms have been gradually returning. Then had a push enteroscopy done after budesonide and the only thing they found was some reactive epithelial chages in the duodenum. At my follow up the other day they basically said they don’t know for sure what’s going on and it could be the beginning stages of Crohn’s since I responded to steroids and had inflammation on the MRE but they won’t treat it without a for sure diagnosis. They said if my symptoms worsen they would repeat testing and see if anything comes up then. I’m considering getting a second opinion as I am at a loss of what to do at this point. It seems insane to me to just wait and see if things get worse. We also don’t know what to do with the blood thinner because vascular said I can come off of it since I was treated for 6 months IF the inflammation is gone. I have also tried diet changes such as no dairy, no gluten, pre and probiotics without improvement. We discussed a low fodmap diet but no one feels comfortable with that right now since I have lost so much weight. Has anyone else had any similar experiences?

I agree with the second opinion. I have had Crohn's for thirty four years. I had blood clots twice in my left leg. I have had all the other symptoms you mentioned

 

[K_Nicole14]

I had my second opinion appointment with an IBD specialist and was officially diagnosed with Crohn’s. I was put back on budesonide and will be on it for a while as long as it works. It’s mild at this point and hopefully the budesonide will help so I can avoid biologics for now.

 

[ronroush7]

I hope it works for you for a long time

 

[musicalwiz]

I agree with the second opinion. I have had Crohn's for thirty four years. I had blood clots twice in my left leg. I have had all the other symptoms you mentioned

Hi everyone!
I am still undiagnosed but was told that I may be early I the stages of Crohn’s disease. I will try to summarize my story here. About 2 years ago I started having episodes of diarrhea and abdominal pain that would last about 2-3 weeks and would occur every couple months. I just assumed I was getting viral GI illnesses or food poisoning but the frequency was a little concerning. Then last year around thanksgiving I developed abdominal pain and diarrhea that never went away. I eventually saw a GI doctor about a month into it when I started losing weight. They did some labs and said everything was normal and it could still just be a viral illness and to come back in a month if not gone. So I returned a month later with more weight loss and now some blood in the stool. Had a colonoscopy and upper endoscopy that came back clear. Then had a CT abdomen/pelvis that found a blood clot in my portal vein. Saw vascular medicine and was started on a blood thinner for the clot. Vascular medicine doctor told me that these clots are almost exclusively found in people with liver disease or IBD so that I likely have and underlying IBD since my liver is fine. Then had an MRE that showed active inflammation in the terminal ileum with wall thickening. This was not seen on my colonoscopy. Also had a HIDA scan to check the gall bladder and breath test for SIBO which were both negative. Then two months later had a capsule study done which didn’t show anything in the ileum but showed some thickened areas and possible polyp in the jejunum. I was trialed on 2 months of budesonide which helped dramatically. Diarrhea went away, most of the abdominal pain went away and I gained back almost 10 of the 20 pounds I lost. That lasted for about 2-3 weeks after stopping the budesonide and now my symptoms have been gradually returning. Then had a push enteroscopy done after budesonide and the only thing they found was some reactive epithelial chages in the duodenum. At my follow up the other day they basically said they don’t know for sure what’s going on and it could be the beginning stages of Crohn’s since I responded to steroids and had inflammation on the MRE but they won’t treat it without a for sure diagnosis. They said if my symptoms worsen they would repeat testing and see if anything comes up then. I’m considering getting a second opinion as I am at a loss of what to do at this point. It seems insane to me to just wait and see if things get worse. We also don’t know what to do with the blood thinner because vascular said I can come off of it since I was treated for 6 months IF the inflammation is gone. I have also tried diet changes such as no dairy, no gluten, pre and probiotics without improvement. We discussed a low fodmap diet but no one feels comfortable with that right now since I have lost so much weight. Has anyone else had any similar experiences?

hi!! I was reading your story and my jaw literally dropped because im not kidding I have the EXACT SAME diagnosis journey. It is now three years later and I’m still having the same issues and they are doing the same treatment that they were doing on you. All I could say is good luck because it is a long process but you should know you are not alone!!