Not Crohn's nor UC

[tek254]

Hello one and all,

I am in a diificult situation and wanted to know if anyone else has been down this road. I was diagnosed with Crohn's , namely in the terminal ileum seven years ago. Routine meds prescribed including biologics. However, 2 surgeries later (one resection, one open right hemicoloctomy) my G.I. And Surgeon no longer think I have Crohn's. Possibly colitis in the past but surgery corrected this. Now 8 weeks post op- ct revealed ulcerations on terminal ileum (location of 2 sections joined surgically) as well as inflammation along entire length of colon which I never had before. Pain at times is damn near unbearable, night sweats, low grade fever, weight loss etc. MD advices me I might need to be on pain meds for the remainder of my life. At this point no one is sure what is wrong with me. All recent tests indicate I am negative in all areas for Crohn's and colitis. Awaiting appt with specialist in large metropolitan area to determine if they can find cause. I am not on any meds besides Percocet due to fact they don't know cause of problem, which they admit is severe. My only options at this time is dilation (which can't be done due to sudden onset of svt during last dilation attempt) or resection . I refuse to have another surgery unless life threating. Looking for any ideas/suggestions what I may be suffering from. Thanks in advance

 

[Jabee]

So you have inflammation throughout your colon, as well as ulcerations in your terminal ileum and your doctors think you no longer have crohn's? What tests are negative for crohn's? Blood work? Biopsies? Many people have biopsies which do not show crohn's as well as normal blood work, even during flares. They're willing to leave you on pain medications but not for the inflammation? While there is nothing wrong with taking medication for pain (I do), I would think that they would want to treat whatever is causing the pain. I am glad you have an appointment with a different specialist because I can't imagine what your GI and surgeon are thinking.

 

[cmack]

Hi tek,

I would want another opinion for sure, possibly several. There is certainly something causing that inflammation. I hope you get some answers soon.


Regards,

cmack

 

[tek254]

Biopsies as well as pathology results along with blood work indicate zero percent for Crohn's or UC. GI doesn't know what is causing my problems now since she feels that test are accurate . No medication or treatment plan has been developed until a cause for symptoms is found. In addition to abdominal pain, I started having back pain approx 3 weeks ago, sometimes sever. I do have Ankylosing spondylitis but the back pain I have now is far different from AS pain. I am at a complete loss as to what to expect next. I do know I'm worse now , both symptomaticlly and clinically, than I have been in a while.

 

[cmack]

Hi tek,

I have an undiagnosed IBD condition as well that started 11 years ago. I have had many of the tests too and got no answer either. 14 surgeries for fistulas and abscesses later, I'm in remission, but something caused it. I'm not sure these tests are always correct. I have my suspicions that diet and smoking cigarettes may have caused my initial abscess that led to all the surgery. I went 95% vegetarian and quit smoking and after 16 months I feel a lot better.


Regards,

cmack

 

[cmack]

My GP recommended this site. It has been a good source of information for me. Check this video out. https://nutritionfacts.org/video/achieving-remission-of-crohns-disease/

 

[Lady Organic]

Hi,
did you have a positive response to any IBD medication in the past?
Its the first time you have inflammation in the colon in 7 years?
The doctors dont want to try a course of steroids? I dont understand this...
I am glad you are having another medical opinion.
Please let us know about this appointment, best wishes.

 

[my little penguin]

AS can cause subclinical inflammation
What are you taking for AS ?
Some of those biologics can make the GI tract worse
Tagging maya142

 

[Maya142]

I think a second opinion would be a good idea.

AS can cause subclinical inflammation, but typically if it's bad enough to require surgery, cause symptoms, then it would be considered IBD.

Now 8 weeks post op- ct revealed ulcerations on terminal ileum (location of 2 sections joined surgically) as well as inflammation along entire length of colon which I never had before. Pain at times is damn near unbearable, night sweats, low grade fever, weight loss etc.

You have ulcerations but they're still saying it's not Crohn's? Have they done a pillcam to look at your small bowel?

AS can cause some of those symptoms - the night sweats, low grade fever, even weight loss. BUT they are much more common with Crohn's and if they're seeing ulcerations, I would guess IBD. Plus if your pain is different from your usual AS pain, then I wouldn't necessarily blame the AS.

I would definitely get a second opinion and would also talk to your rheumatologist about what could be causing this.

Even if you don't have Crohn's, your AS needs to be treated and that is typically treated with biologics. Percocet will only help with the pain but it won't treat the disease.

 

[tek254]

I haven't been on anything lately for the AS. It really hasn't been an issue. A pillcam has been discussed but hasn't been performed with my frequent history of strictures/obstructions. As for meds . i have been on 6mp, humira and up until surgery in February, remicade. Test showed antibody development so I was placed on a double dose of remicade. I honestly didn't feel any different on it and it definitely didn't slow or restrict further damage. Steroids 2-3 times a year .

 

[eleanor_rigby]

I had surgery for a perforation and upon examining the diseased bit of bowel that was removed the pathology said no evidence of Crohn's. I have had colonoscopies, which show ulcerations and inflammation and the pathology said no evidence of Crohn's. My blood tests are all normal. But I most certainly DO have Crohn's. Despite all this, my GI diagnosed me with Crohn's and I am treated for Crohn's.

 

[mere282]

You should probably go see a ibd specialist. That's what I had to do dr's had me feeling like I was crazy.. she diagnosed my Crohn's

 

[Jabee]

Something is causing the inflammation, that's for certain. I think it's irresponsible of your doctors to shrug their shoulders and direct you elsewhere. I would think they would at least put you on prednisone to control the inflammation.

I do know that common variable immune deficiency (CVID) can cause gastrointestinal problems very similar to crohn's. Have your immunoglobulin levels (HGA, HGB, and HGM) ever been tested? I hope you get in to se the new doctor fast and that they will be able to help you.