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Symptoms in remission?

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Ulcerative Colitis
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Posted 4/29/2018 3:51 PM (GMT 0)
I have been on Pred for over two months and am almost done with my taper, Starting 10mg tomorrow.
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Although i only go to the bathroom 1-2x a day, I told my GI i am still having symptoms. My stool is still very soft and mushy, I have pretty bad pain in my rectum during BMs, and also a lot of abdominal pain/discomfort during the day.

He ordered a FCP test a couple weeks ago, and it came back normal (18). He told me the inflammation is gone and that my symptoms now are most likely from something else, like ibs. He said based on this test he wouldn't want to up any of my medications. It is kind of bitter sweet, I am happy the test came back in normal range, but now I feel like i am at a plateau.

My questions are:
Am i in remission b/c i dont feel like it?
could the FCP test be wrong?
Should i get a second opinion?

Thank you
Posted 4/29/2018 5:21 PM (GMT 0)
If you have bad pain during bms, you are still flaring. It's good yiu have improved a lot. Your doctor would have done better to take a look rather than depend on a stool test for inflammation.

Considering the discomfot and his term of IBS, did he not prescribe you any antispasmodics?....... At the very least that can help with the discomfort. I suggest you request dicyclomine....it's been great help for me.

Are you still on the enemas and canasa?

q
Posted 4/29/2018 6:37 PM (GMT 0)
Please do not get discouraged, it definitely could be IBS, or something else. On the other hand, I had a similar situation where I was on a biologic and my FCP came back normal, only to start shooting up shortly after. I think you're going to have to be patient, but keep a close eye on your symptoms. You do not want to taper off and end up back at square one. If things continue to worry you, keep doing FCP tests as you taper to see if things are changing.
Posted 4/29/2018 11:17 PM (GMT 0)
Could be mild rectal inflammation. Keep an eye on it. If it persists or gets worse then ask about steroid suppositories or enemas.
Posted 4/30/2018 8:26 PM (GMT 0)
Thank you, I am trying not to get discouraged, I know its only been two months of treatment so perhaps I just need more time. I am still using the enema and suppository, I've gotten pretty comfortable at using both now so that's good. It just worried me the doctor sounded like everything has been taken care of and I still don't feel good, so its scary. I have a constant pain/tightness in my abdomen and I might have a CT scan done to check out that area. I'm worried if its not due to inflammation, then I basically just have to get used to feeling this way...

I have tried Tylenol and dicyclomine for this and it hasn't really helped :/
Posted 5/1/2018 1:29 PM (GMT 0)
"My stool is still very soft and mushy" That's normal for us. Our stool consistency may never be 100% pre-UC, and there will be lots of bm-to-bm variation.

"I have pretty bad pain in my rectum during BMs, and also a lot of abdominal pain/discomfort during the day. " A few questions:
1.) Any history of hemorrhoids, anal-fissures, or rectal-abscesses (as all are pain causers)? Any blood in stool? Does it hurt to sit? Have you squatted over a mirror and looked for anything unusual surrounding your sphincter? Abscesses often look like little, red, pimple-sized dots in the tissue just outside of the sphincter. Anal-fissures look like paper-cuts, little tears that might showup just inside or outside the sphincter.
2.) Any history of abdominal surgeries for anything in the past? I ask as abdominal surgery can leave what's known as "adhesions" that can be pain-causers.
3.) On a scale of 1-10, with 10 being unbearable, how bad is the pain you're experiencing during the day and during bms?

I've had FCP stool tests with very mild flare symptoms, similar to yours, and they come back normal. From my experience, FCL/CRP tests aren't great at finding very limited extent and mild inflammation. They can spot moderate and severe inflammation easily though!

You could always have a small-bowel follow through X-Ray, to check for inflammation within the small intestine. It's possible to have crohn's, SIBO, or something else going on. You typically swallow a contrasting dye prior to the procedure, which enables them to better see the small bowel in xray.
Posted 5/1/2018 8:18 PM (GMT 0)
I had some internal hemorrhoids found on my 2nd colonoscopy, but they were small. Id say the pain in my abdomen is like a 4 or 5 but very consistent. I read on someone else's post today and thought they put it well, it feels like a rock low on my abdomen. The rectal pain is like a 6.

My first symptoms started in June 2017 and I had an MR Enterography and full colonoscopy with biopsy done. Both of which did not diagnose me with UC. I had to repeat a colonoscopy in February 2018, when I was in full on flare, in order to get a proper diagnosis. This has me thinking... they could miss a lot of stuff on a scan.. maybe the reason for my pain won't show up on a test like this and it has me worried.

I have examined myself in the mirror, and the doctor looked himself, and over the last year I've had a lot of unexplained redness around my anus, but my GI just thought it was from using the bathroom constantly. Unfortunately, I still have a little redness and yes it is uncomfortable to sit sometimes, sometimes its even uncomfortable while walking.

I guess im gonna fight him on the FCP if he wants to tell me I have no inflammation hes going to have to go in and confirm. Ugh so tierd...
Posted 5/1/2018 8:58 PM (GMT 0)
Sounds like it's definitely enough pain to warrant further investigation for sure if you're a daily 4, 5, 6 on that scale. Nothing to pooh, pooh by any means. Gallstones, pancreatitis, kidney stones been eliminated as possibilities?

To eliminate the possibility of irritation from wiping so much: you could try a portable bidet, or use moist wipes rather then toilet paper (which can be abrasive). However, it sounds like there is a lot more going on then that though. As we're talking mild irritation (a 1-2 on the pain scale) from abrasion and over-wiping.
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