Anyone experience this?

I'm 43 years old, and I was diagnosed in Oct 2013 with Pan-Colitis. I spent four days in the hospital on a Prednisone drip and then sent home with Prednisone pills and Lialda. I tapered off of the Pred by the end of October and began having difficulty eating most foods (I was limited to eggs, chicken, lettuce and fish.) Starting in Nov 2013, I started taking VSL #3 probiotic, Gluatamine, Omega 3s and multivitamin and turmeric. I still had difficulties eating other foods and I shared with my GI that I had some symptoms that were similar to Crohn's and wondered if maybe I had that, so my GI conducted a colonoscopy in late Nov 2014 which came back completely clear. He was shocked at how clear my colon was and stated that he'd never seen such a quick recovery. He said there was no sign of Crohn's at the ileum so I didn't have Crohn's. I told him I was still having extreme difficulty with food (feeling nauseous every time I ate and diarrhea when trying to introduce new food.) He said I was in remission and should be able to eat anything, that it was probably just IBS and he wanted to place my on an anti-depressant at a low dose that he'd seen work with IBS. I didn't believe it was just IBS, and I didn't want to take the anti-depressant so I added rhodiola to my diet to assist with stress levels. This did help and my diet expanded more, but still very limited: no dairy, wheat, seeds, nuts, red meat, corn, raw fruit or vegetables, alcohol, or caffeine and limited sugar. I know after reading so many posts that these are typical items most IBD sufferers have to avoid, so I've accepted this. I figured myself lucky for going into remission so quickly, but physically every day was still hard and even the foods I could eat were difficult to digest.

Then a few weeks ago, I went into another flare similar to the one last September (7 months ago.) My GI placed me on Prednisone with a two week taper, still taking it. I can't understand why this is happening. I've taken all my meds, herbal remedies, strict diet and my GI said that I was in complete remission. I saw him last week and he said that the UC is much deeper in my body than he thought, that my body has an immense ability to contain the disease, but it is now progressing faster than anticipated. He's asked me to research Remicade and Humira to decide which one to start taking.

Has anyone else had such a "quick recovery" only for it to become much worse five months later? Have you been told it's UC and then later learned that you had Crohn's? Have you ever asked for an upper GI Endoscopy or the camera pill?

Thank you for taking the time to read all of this.


Diagnosed with Pan Colitis Oct. 2013, Prednisone
Clear colonoscopy Nov 2013
Flared again April 2014, back on Prednisone
Lialda, VSL #3 probiotic, Gluatamine, Omega 3s, multivitamin, turmeric, rhodiola
no dairy, wheat, seeds, nuts, red meat, corn, raw fruit or vegetables, alcohol, or caffeine and limited sugar

Are you sure it was a full colonoscopy and not just a flex sig? I had a major flare in the summer of 2012 which seemed to die down by mid September of that year. By March of 2013 I started having watery diarrhea and just weird rumblings after eating and was pretty certain a flare was coming on. My GI performed a flex sig (which doesn't go too far up) and everything he saw looked healed, just minimum scarring from past inflammation and he wasn't sure what was causing my symptoms.

By July and August though things just got worse and by September I was back into a full on flare though. Had later would say that it was possible there was inflammation further up that he couldn't see during the flex sig.

I was also given the camera pill twice to check for signs of Crohn's/upper GI inflammation and they never found anything. If you have any specific questions regarding that I'd be more than happy to answer them off you.

Good luck :)

Thank you for your posts. Yes, it was a full colosnoscopy, that's how he was able to see my ileum and state that he didn't see any Crohn's activity there. It's confusing as to why it could be 100% clear and then go so downhill.

I will definitely ask for an upper GI and the camera pill.

Then a few weeks ago, I went into another flare similar to the one last September (7 months ago.)

How was this flare diagnosed? By symptoms alone, or with a colonoscopy?

I saw him last week and he said that the UC is much deeper in my body than he thought, that my body has an immense ability to contain the disease, but it is now progressing faster than anticipated.

This makes no sense. UC doesn't reside anywhere except the colon; it doesn't lurk in the tissues, muscles etc. elsewhere. In fact it doesn't even go below the surface mucosa (the innermost layer) of the intestines, unlike Crohn's. You said your last colonoscopy was clear; does that include clear biopsies too? It's possible for the colon to be visually disease-free, but for the disease to still be present at the microscopic level: only biopsies can determine that.

On a more general note, IBD can come and go very quickly. Over time, repeated bouts of inflammation tend to cause permanent damage; erosion of the colonic folds and scarring, mainly. If you're brand new to IBD, though, then there may not yet be any signs of chronic inflammation in your tests.

Frankly, I wouldn't consider going on a biologic until you find out more about what it is you have.

There is me, who has had it for almost 40 years, and have never had surgery and just finally was put on biologics, and then there is one guy I worked with who went from never having anything in his life, to fulminant UC and a colostomy bag in 60 days...that's just the disease process unfortunately. It's highly unpredictable. Some people go decades with minor glitches, others go to the end results pretty fast.

You can heal up in a matter of months, then decline months later. You can have a colon that looks like it has never had a disease when in remission (like mine), and others who look like they needed to be removed yesterday...its that fickle of a disease. You can feel great one day, and horrific the next.

You can eat, exercise, take medicine...but sometimes the disease has it's own mind. There are a LOT of new drugs out there now, and newer drugs coming faster to the marker each year.....so take heart in that.

My experience has been similar this may or may not help you.
I was diagnosed 2 years ago with UC after a colonoscopy. Last month, I had a GI do another scope and my colon is clear, no signs of any IBD according to GI and biopsy results. I see the GI tomorrow afternoon for a follow up to scope. What he has told me so far is the extreme amount of ibuprofen I took for years before the first diagnosis, could have had my colon that messed up. for the previous doc to say UC.
I have also had my gallbladder out after the first scope and the GI said I have "bile staining and adhering to my colon wall which could be my current symptoms". I will find out more tomorrow on that.