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The Anxiety of Returning Symptoms

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Ulcerative Colitis
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Posted 2/1/2021 7:14 PM (GMT 0)
Hey there,

I have UC and have been in remission for about a year and a half. Every so often, I get diarrhea (like right now) and it resolves in a few days. But I can't help but think, every time, that this is it, here comes another flare. I'm sure everyone has dealt with this at some point throughout their IBD journeys. This anxiety can be pretty crippling as I often think the worst is around the corner. And there's really no guarantee that this bout of diarrhea WON'T be another flare. I just have trouble thinking positively and kind of fall down this worry hole that I know cannot be helpful for my tummy.

Anyways, just wanted to put this out there. I suppose I'm curious how people deal with the looming worry of another flare, especially if you experience mild symptoms (that may or may not even be related). It's something you can try to explain to a loved one or friend (They may say: "Oh, don't worry. I get diarrhea sometimes too, it's not a big deal."), but unless they've dealt with the severity of months and months of flaring, it's hard to truly empathize, however hard they may try.

D

*I also want to be sensitive to those that are in flares right now, we're here for you!
Posted 2/1/2021 7:27 PM (GMT 0)
For me, most people really don't understand this disease. I don't usually share my issues for that very reason. That would only stress me out more when I hear some of the ignorant responses. With that said, when I have stomach issues, I try to stay calm. My mindset is this......if it's gonna be another flare, it is what it is. If you stress out over it, it will make it worse.
Posted 2/1/2021 8:06 PM (GMT 0)
This is the worst part of having UC! Anytime things are less than perfect that cycle of worry starts up again. It is the worst. I don't have any helpful advice because it is something I also struggle with.
Posted 2/1/2021 8:16 PM (GMT 0)
Everyone's symptoms vary...bottom line is knowing what they mean before getting to the most obvious. A long learning process.
I dont get diarrhea UC-wise now that my UC flare location is limited in rectum, and inflammation is very mild.

I was worse mentally when I didn't understand symptoms, how to use my meds efficiently and when to increase them. My GI eventually left it up to my discression and gave lots of refills...easy so I didnt have to see him each time. If anything was out of the ordinary, a call or physical appointment was available. I cried many times at my appointments. Having depression never helps.

If I did have diarrhea during a remission phase out of the blue, it would be from food or some invader. During that bout, increasing fibre supps and probiotics is what I would start with...but I would increase rectal meds anyway if it was longer than a day or two. I would also ask for a stool test if it was longer as well.

I don't freak about a flare specifically anymore, but thoughts of not being able to get meds creeps in there, especially during covid. I worry about getting older and not making it to the bathroom etc.

When a flare happens...I'm VERY ticked and always feel like crap all over. I use dicyclomine, gravol, tylenol, increased meds, and eat according to how I feel, because nausea and cramping and butt spasming is a huge part of when I flare.

It is what it is...definitely...having a plan is at least a good thing. Doesn't make being in a flare any better tho.

q
Posted 2/1/2021 8:27 PM (GMT 0)
I totally relate to everything said. This guessing game is sooo hard. Even when everything is ok you never know what tomorrow brings. I guess it depends on personality... for me it’s very difficult to deal with. I know that even “normal” people can have daily fluctuations with the bowels but for me every time it’s a million dollars question - is it nothing? Or something?
I wish someone has some tips.
Posted 2/1/2021 9:05 PM (GMT 0)
When I'm doubting, I do a calprotectin test.
Posted 2/3/2021 6:58 AM (GMT 0)
I have such a hard time with this. I have a colostomy now so it has changed my view point a Little. (I don't stock up on Depends and Calmoseptine.) Regardless, when something pops up different I start a food diary, start eating SCD yogurt and chicken bone broth, up my vitamin D and turmeric, and do stress relief. That might be meditating, listening to music, taking walks or tutoring kids. Your list will be different. After 6 years with this disease I have finally learned to recognize some of my symptoms. My CRS/GI also give me meds to keep on hand in case things start going south on a Friday night. (That's helped my anxiety more than any anxiety pills they want to give me.) I also call/email friends that I have made that also suffer from UC/Crohns. And finally....I come here. The people here help tremendously. But...I still worry and pace...just not as much.

As time goes by you will notice some patterns. If my Uevitis, psoriasis, or eczema break out I now know to start eating soft foods or nutritional shakes cause there's something uncomfortable coming. (This is usually when I wish I had happy pills....but the benadryl I take for it knocks me out so I can't worry as much.
Clo
Posted 2/3/2021 1:00 PM (GMT 0)
For me, stress is my enemy. As soon as I begin to flare....any blood, diarrhea, spasms...my doc puts me on Clonazepam 2x a day. After about a week of it, I begin to taper from twice a day to once. The next week I use it every other day and the next week discontinue it. It made an AMAZING difference in the duration of my flares. My gastro doc also seems to think I have IBS along with the ulcerative colitis. I do know one fact...stress is what I have to deal with to stop a flare. In the past I've tried meditation and relaxation exercises. Maybe I'm just too feeble minded to control it, but the drugs definitely make life better. Best of luck to you.
Posted 2/3/2021 6:35 PM (GMT 0)
I never struggled with anxiety (even after difficult life circumstances and many challenges) until I got UC and other health issues. It's such a vicious cycle since anxiety maintains the flares and makes them worse. I have to meditate daily and joined a meditation group just to take the edge off. No meds for me yet. Medical issues can be very traumatic and I have some PTSD like symptoms from being super ill. Yesterday, I had a weird sweet smell when having a BM and started panicking that I have cdiff! I'll do a stool test, but i don't have D at the moment so they will reject it in the lab anyhow..ugh.
Posted 2/4/2021 3:38 AM (GMT 0)
I haven't made it to any relaxing medications yet. I probably should. I just don't think I could take one more pill right now.

One of worse enemies is stress and Dr. Google. Yikes!!! Sometimes I get so stressed I start cleaning, then after that I start cooking. I try to make things that I can freeze and use later during my flares...but I struggle with it.

Even if you go to counseling, sometimes even they can not really understand what you are going thru. I think that sometimes you have to share your anxiety with others that are traveling down the same road you are on. It seems like they can relate to you and your problems more and they have better suggestions.

Hang in there!
Clo
Posted 2/4/2021 9:36 PM (GMT 0)
I completely understand that. I'm here reading this because I've had to tinker with my medicine regime due to other health related issues and my symptoms are returning. With that comes the extreme anxiety and depression. I'm a 40 year old man and broke down and cried this afternoon, after endless hours with dr Google.
It's been a while since I've hit that low but seems like esp with covid, there's nobody to talk to about it.
So yeah...tho stress def doesn't help, it's a real part of this. This place can be helpful to feel less alone.
We all take different approaches and I find it very interesting what works for one doesn't for another.
Good luck!
This too shall pass

Post Edited (LeafsFan) : 2/4/2021 2:40:36 PM (GMT-7)

Posted 2/5/2021 12:03 AM (GMT 0)
I wanted to chime in because I can relate. It’s an ongoing work in progress for me. There are definitely times when I will not have a perfect poop day for me (what is that anyways!?) and then my mind starts the spiral of ‘is this the start of a flare...’. In fact, I see a psychologist semi regularly and my Uc health anxiety is the main cause of my panic and anxiety. It’s quite crippling because for me the anxiety is always worse than my UC has ever been.

I as well, don’t want to be insensitive to those flaring or struggling right now. I know that I should be happy I’m in remission but mentally I’m not always there. The struggle for me is real and at times debilitating. Sigh...

I try to recognize that everyone has daily stool variation and food and hormones are the biggest factors for me. This does help.

Anyways, work in progress. I’m also working on the idea that nothing is ever certain in life. I could be flaring THIS time... and I have a plan of I am. Easier said than done but this is what I’m telling my anxiety.
Posted 2/5/2021 11:29 AM (GMT 0)
Your post really resonated with me so I wanted to reply. I also struggle with this big time. I’ve had up just over 2 years and it has been a struggle to get it under control and even when it is relatively ok, I worry all the time about daily variations and what it means. Feels like I’m constantly walking a tight rope with this illness. Right now I’m experiencing some symptoms that could be totally unrelated but you just never know and it does my head in. Sorry I don’t have any great advice but just wanted to say I feel the same!
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