Feeling Worst after a colonoscopy

[LuckyD]

I had a colonoscopy on Monday to check how my current treatment is working. The only other colonoscopy I've had was back in October 2019 when I got diagnosed so I don't have anything else to compare it to. The prep itself was not as bad as I remember and the procedure went smoothly. It may be because this time I am healthier.

Before starting the prep, I was doing great!! I was having normal BMs and my last fecal calprotectin was 59. My GI felt pretty confident my scope would look good and possibly in remission. After the scope he mentioned he saw some mild inflammation but he wanted to see what the biopsies show. He did remove a polyp in my ascending colon and found a hemorrhoid in my rectum.

I am now 2 days post colonoscopy and I am having diarrhea!! Is this common? I was afraid this would happen and now I'm feeling discouraged.

 

[Scipio]

I am now 2 days post colonoscopy and I am having diarrhea!! Is this common? I was afraid this would happen and now I'm feeling discouraged.

I think it's pretty normal. I had my routine colonoscopy a week before yours and found similar results: mild inflammation in the terminal ileum but no ulcers. Pathology report is pending. Anyway, it took about 5 or 6 days after the colonoscopy for function to get back to normal. Which isn't too suprising when you think about what your colon just went through - getting completely emptied out with some form of powerful laxative and then inflated with air to facilitate the colonoscopy. In fact it may be surpising that it took only 5 or 6 days to recover from that.

 

[LuckyD]

I think it's pretty normal. I had my routine colonoscopy a week before yours and found similar results: mild inflammation in the terminal ileum but no ulcers. Pathology report is pending. Anyway, it took about 5 or 6 days after the colonoscopy for function to get back to normal. Which isn't too suprising when you think about what your colon just went through - getting completely emptied out with some form of powerful laxative and then inflated with air to facilitate the colonoscopy. In fact it may be surpising that it took only 5 or 6 days to recover from that.

Oh wow...thanks for sharing your experience. I hope your results are promising.

I reached out to my SIL who is a GI nurse and she mentioned that the prep can sometimes cause some inflammatory appearance in the tissue during the scope. She told me to give it a few days for things to settle down and not to worry to much.

In my case there's overall improvement. However, I am really hoping to hear "remission." Well see what the biopsies show...keeping my fingers crossed.

 

[LuckyD]

@Scipio , you were right!! I am back to pre-colonscopy normal. It did take around 5-6 days but I'm a happy camper.

Now I just have to wait a couple of weeks for the pathology results and follow up appointment to see where we go from here.

I hope all is well with you.

 

[Scipio]

@Scipio ,
I hope all is well with you.

I'm glad normal function is restored. I would have been surprised if it wasn't, since colonoscopy effects are usually temporary.

All is well with me symptom-wise. I'm still almost comletely symptom-free. But the pathology report came back saying there is chronic low-level inflammation persisting in the terminal ilem. So now my GI has ordered a test of Stelara and anti-drug antibody blood levels to be measured shortly before my next Stelara dose in November - with an eye to possibly boosting the Stelara dose to maybe every 4 weeks to knock that inflammation down.

Bummer. I was hoping it would show no inflammation.

 

[LuckyD]

I'm glad normal function is restored. I would have been surprised if it wasn't, since colonoscopy effects are usually temporary.

All is well with me symptom-wise. I'm still almost comletely symptom-free. But the pathology report came back saying there is chronic low-level inflammation persisting in the terminal ilem. So now my GI has ordered a test of Stelara and anti-drug antibodies to be measured shortly before my next Stelara dose in November with an eye to possibly boosting the Stelara dose to maybe evey 4 weeks to knock that inflammation down.

Bummer. I was hoping it would show no inflammation.

Oh man...I'm so sorry to hear. But at least it sounds like your GI has a plan in place and you still have somewhere to go with stelara. I hope the antibody test show going to every 4 weeks is the way to go. That might be the thing that finally gets you "across the finish line."

 

[my little penguin]

@Scipio
Hope you can just increase the Stelara and be done
My kiddo has been on every 4 weeks since March 2018 no issues

 

[Scipio]

@Scipio
Hope you can just increase the Stelara and be done
My kiddo has been on every 4 weeks since March 2018 no issues

Thanks. Part of me is hoping that simply boosting the Stelara to every 4 weeks can fix the inflamation problem too. But the other part of me is dreading that outcome. Because I was hoping to retire at the end of the year, and paying the Medicare Part D copays for 6 doses of Stelara a year was going to be financially challenging enough. And so the thought of paying for 12 doses a year instead is enough to make my wallet burst into tears.

 

[my little penguin]

Just a heads up medical assistance would not approve Stelara for more than the fda approved dose (90 mg every 8 weeks ) from talking to other parents who had it as a primary insurance
Not sure on Medicare

For our Private insurance -we fought for 8 months twice (4 years apart ) to get the higher frequency approved .

 

[LuckyD]

So I had my follow-up appointment yesterday and received the results of my colonoscopy biopsies. Overall, I got good news! My GI took 5 biopsies total throughout my colon. Four out of the 5 show no active disease!! However the biopsy taken in my ascending colon (right side) shows a small area of mild inflammation. I also had a inflammatory pseudo polyp removed in this area but it was benign.

My GI pretty much said nothing to worry about, no changes in my current meds and even said "remission."

While I am extremely happy I'm still a bit surprised I am being considered in "remission " despite the small area of inflammation. Does this happen often? I guess they feel like this area will eventually resolve itself with time?

They did schedule me for a follow up appointment 3 months from now to see how things were going.

 

[Scipio]

Congratulations on the good news!

As for the "remission," there are several levels or kinds of remission. There is symptomatic remission, which is what most patients are interested in achieving - relief from symptoms. There is endoscopic remission, which means there was no visible inflammation or ulceration upon colonoscopy. Endoscopic remission is also pretty much the same as what has been traditionally called "mucosal healing." And there is histologic remission, which is no sign of inflammation when biopsy specimens are examined under the microscope and is probably the strictest or hardest to achieve form of remission.

So "remission" in general can be variously defined by any one, or any two, or all three of those types of remission. It looks like you passed the first two and and had only a mild spot on inflammation according to the the third. And for the doc, apparently all that good news added up to comprise a generalized "remission." Your therapy is working.

 

[LuckyD]

Congratulations on the good news!

As for the "remission," there are several levels or kinds of remission. There is symptomatic remission, which is what most patients are interested in achieving - relief from symptoms. There is endoscopic remission, which means there was no visible inflammation or ulceration upon colonoscopy. Endoscopic remission is also pretty much the same as what has been traditionally called "mucosal healing." And there is histologic remission, which is no sign of inflammation when biopsy specimens are examined under the microscope and is probably the strictest or hardest to achieve form of remission.

So "remission" in general can be variously defined by any one, or any two, or all three of those types of remission. It looks like you passed the first two and and had only a mild spot on inflammation according to the the third. And for the doc, apparently all that good news added up to comprise a generalized "remission." Your therapy is working.

Thanks for the detailed breakdown Scipio. All things considered, I am definitely grateful for where I'm at. I am barely at the 2 year mark since getting my UC diagnosis and I'm just happy to feel somewhat "normal" again. Of course, I would have loved to hear hystological remission but the way I see it, I am almost there.

 

[James02]

As for the "remission," there are several levels or kinds of remission. There is symptomatic remission, which is what most patients are interested in achieving - relief from symptoms. There is endoscopic remission, which means there was no visible inflammation or ulceration upon colonoscopy. Endoscopic remission is also pretty much the same as what has been traditionally called "mucosal healing." And there is histologic remission, which is no sign of inflammation when biopsy specimens are examined under the microscope and is probably the strictest or hardest to achieve form of remission.

So "remission" in general can be variously defined by any one, or any two, or all three of those types of remission.

Very interesting, I didn't know this. Thanks for sharing.