Frustrated

Hello,


So I have been tapering from 40 mg of Prednisone since being diagnosed in February. This upcoming Monday I will drop down from 20mg to 15mg and so on each additional week.

I guess Ive been doing pretty well. I have 1-2 BM a day, No blood, formed (sometime a little soft + a little mucous), fatigue / Headaches/ lightheadedness ( Could be Pred). However...

I mentioned to my GI on my last visit before the taper that I still have a good amount of abdominal pain. Although it is pretty mild it lingers for a long time and just wont let me forget. If i did not have this, I would consider myself in a pretty good remission. The "pain" is located about four inches below my belly button, centrally. It is not even a pain as much as a tightness or pressure, and it really bothers me. I also have some anal irritation/discomfort after a BM. My GI told me he cant guarantee I will be 100% pain free and that it could be IBS, he is more concerned about blood and number of BM. This pissed me off when I thought about it later bc I never had IBS, and he took a very long time to diagnose me in the first place, dismissing me with IBS. If this pain doesn't subside I don't think I can stand it.

What more can i do? Could diet help? any kind of topical steroid? Foam/Suppository/enema? Could it really just be IBS? Should I have a fecal Calprotectin test done to check my inflammation? Should I switch GI's or do i need more time on my current meds?

Any suggestions would be appreciated. Thank you!

Im frustrated because im so close to being normal. ugh. Its not mental, when the pain isn't there i feel good. I have a pretty high tolerance to pain and this sucks.

When a doctor can't fix something because it doesn't show up on a test then they just don't have answers, happened to me and others here. This was very upsetting in my early days with UC but since I got little symptom relief from RX (and GI's) I moved into the world of supplements and diet modification.

That was not an easy journey either, full of bumps and disappointments, but my symptoms finally got under control. Now there is no blood, no cramps, no fatigue, no urgency, etc.

98% of supplements made me worse or no better. Diet mod. was very hard to figure out but finally got there. IBS is one of those catchall terms that doctors use when they can't pin it on a physical source through testing.

However I asked my current GI if he thought my food intolerances were due to IBS and his opinion was it was UC. I never had physical pain as the OP does, just a lot of mental pain.

Start reading books about IBS, stay away from internet bamboozlers who promise a "cure". Your doctor can be a resource but at this time IBS is not a simple thing to fix. Good luck.

edit to add: I agree with TroubleT: add mesalamine enemas to help rectal pain.

Patience, there's no instant-gratification with UC. Healing fully is going to take a series of months, and it's not a linear, steady improvement from flaring to healed. There will be lingering symptoms and dramatic ups and downs akin to a roller-coaster ride.

Sounds like you're doing quite well at the moment, congrats: "I have 1-2 BM a day, No blood, formed sometime a little soft + a little mucous." You're only a month into this whole flare recovery, and on a lot of prednisone, so I'd hang-tight, keep an eye on it, and keep pushing your doctor if it persists.

We can have pains for all sorts of reasons: UC inflammation (I've had sharp knife-stabbing pains, and milder aches), trapped gas and/or stool, and various other non-UC-related things: pancreatitis (which we're more prone to getting), gallstones, kidneystones, and any variety of things. We can have spasms within our intestine that are painful and can be treated with anti-spasmatic drugs.

Some folks do acquire IBS secondary to IBD, and that could be you. Also upto 15% if IBD patients continue to have GI symptoms even after scoping shows no active inflammation. Some of this is due to scaring, but in others it is unexplained.

Sometime the unexplained persistence of symptoms is called IBS - especially if the particular symptoms are classic IBS and/or respond to IBD meds. But other times there is no specific diagnosis. Maybe it should still be called IBD, but IBD is medically defined as chronic INFLAMMATION, so it is hard to use that diagnosis after inflammation is gone.

You can try upping IBD meds on theory of low level inflammation. You could ask for IBS meds to see if symptoms respond. You can also hope it just goes away without a diagnosis. It is also possible you have some scaring or thickening of the colon wall that will give chronic pain without much hope of relief. IT is also possible the pain only occurs in connection to some state of gut microbes, and they may re-balance over time - or you might respond to particular strains of probiotics

good luck

Trust your instincts and keep trying to figure out what could be causing your pain. Maybe it's not your colon. What else is near that area of pain? I know people can have phantom pain with no source but I always figure my body is telling me "pay attention" or "stop doing that (whatever "that" is) when there is pain.


Suggestions:
Get a second opinion from a GI who specializes in IBS.
Maybe it is inflammation in an area hitting a nerve cluster.
I have used acupuncture in the past, worked for a knee injury, didn't work for UC.