Looking for rational opinions

Hi all,

I always seem to be asking for advise regarding whether these are UC symptoms or normal everyday life symptoms. I seem to micromanage my symptoms to the point of over sensitization to any body feeling within my digestive system. I also have anxiety about UC. And so, saying that I had a question.

I am on
Salofalk enemas every other night. In between nights a salofalk suppository for basically peace of mind to know I’m covered. I’m also on salafalk oral 9 a day which is why I’ve been on my entire uc journey which is 16 years. I’ve been in long remissions during that time. I just added the enemas in December after starting a flare and have tapered to every other night for about a month. Maybe a little over a month. I’m constantly nervous of inflammation and am getting a scope soon. My last one February 2018 was completely normal.

I am feeling ok usually 1 bm a day but the past couple days I have noticed a bit harder stools not super hard but harder. I am going 1 time in he morning. After going, it feels like my rectum is irritated. I’m wondering if it’s bc the stool was larger and harder than normal? It was former and thicker. Basically normal looking.

Today I have had another Bm (second of the day) in the late afternoon. This one was small pieces that floated. I ate black beans last night.

I also feel some abdominal tenderness.

Please let me know what you think. Inflammation? Normal? I forgot to say I used anusol ointment and when applying could feel irritation and sort of soreness right in the on the opening of my anus and rectum. Is that internal or inside?

Lastly, started Dexilent which is a PPI for acid 4-5 days ago.

I’m worried but rationally know I cannot have 100% same consistent stools everyday. Not possible.

Sorry this is so long. I’m just nervous.

Thanks

1-2 bms a day is great. Doesn't sound like inflammation or a flare to me.

You can see blood on toilet paper. I don't even know what mucus is ha ha (at least I've never noticed it as a symptom of UC).

Anus more probable...and that doesn't signify a flare.
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It took me a long time to stop being on edge about my BM's, a UC version of post-traumatic stress syndrome. Because you got into remission then had a flare in 2009 and 2018 you don't trust that your remissions are reliable and stay on alert (my opinion FWIW).

Your current symptoms don't sound bad but you are the judge of how you feel. And yes it is hard to figure out what is "normal" after getting UC, it is the start of something or just a blip? Your c-scope will tell you whether inflammation is higher or lower than your last one. That's science giving you facts. IBS could be a factor in your symptoms and that will not show up in your scope.

Have you thought about being treated for anxiety? I'm suggesting talk therapy not necessarily RX meds. I used hypnotherapy way back and it was useful and my non-UC spouse uses relaxation tapes for his anxiety, works well for him.

I still look in the toilet but nowadays it's "well done" not "oh no". It took years to get to that place and I am never complacent, just not anxious anymore.

A lot of us who end up in remission still have bowel issues that look like an IBS sort of situation. For example, I have one or two BMs per day, but when it's time to go to the bathroom I feel some urgency and discomfort. Also my diet still needs regular tweaking.

We spend so much time focusing on the disease that nobody really tells us what remission is going to feel like. They just do calprotectin tests, colonoscopies, and blood tests and tell you that you're all good... but you might not feel that way.

No matter what happens, the only thing indicative of a true flare is mucous and blood. Even "normal" people who don't have IBD get bowel upsets, due to how they live their lives, what they eat, etc. I agree with what was said above that having UC creates PTSD and hypervigilance about your bowels, but not all bowel discomfort means a flare is returning. Try your best to stay objective!

Welcome to remission! Post-flare PTSD anxiety and worry is real and persistent. I suffered with that my self for a while after achieving a remission.

You need to put as much work into keeping your brain healthy as you do your colon. Start with 10 minutes of meditation every day. It will change your perspective, I can almost guarantee it.

I have been not having flair symptoms for about a month now (on prednisone) and I’m like you, any change, even size, or shape and I overthink. I keep telling myself that “normal” people don’t have the same BM every day. I think ipoop has written with confidence on many threads that in remission you get occasional differences and one mushy BM does not a flare make. I take comfort from remembering this .

Also, I don’t mean to downplay your concerns, but I have to ask, have your symptoms been mild good enough to live a normal life? It sounds like they might be, and congratulations if they are ! I hope for this and I would be just like you I think taking the (5 asa) medication even after years of remission. When I see my doctor I’m going to ask if there is any extra I can have like retention enemas ... anything that can keep me like I am now, and possibly start a gentle running program again . And hopefully help me to stop thinking about this every. Single. Day.

Oh I see. Thank you. That's great then.

Thanks Sara. It really sucks when we freak out over everything and anything related to digestion. I know I will flare again at some point but ruining my days worrying and panicking about it can’t be good for me or anyone close to me 😔

I’m working on it.