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Question - small physical anxiety triggers that cause trips to restroom

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Ulcerative Colitis
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Posted 5/13/2015 2:44 PM (GMT 0)
I have UC, and I'm on prednisone 20mg/day, berberine, Florastor, and tumeric. These are not helping much. I have taken a lot of mesalamine and seen no effects.

I am currently having to go 12 to 15x per day. With many of those, the only thing that comes out is a small amount of liquid and then really bad cramping, like my body is trying to expel every last drop. It's like someone who is vomiting and has the dry heaves. Sorry to be so graphic.

Clearly, many of these times are caused by small anxiety triggers. For example, when I'm in my car, everything settles down. I can drive all day and not have to go. But when I arrive, I have to go very urgently. That's clearly a mental trigger. I sit in meetings and everything is fine. I return to my cube and have to rush to the restroom. I go out to lunch, and it's fine. When I get back to my cube I have to go.

If I look at listings of used stuff for sale, like cars or houses, there is a small but noticeable trigger and I have to go. It's the physical excitement of seeing a one-of-a-kind deal that sets me off. It has always been this way for me, for many years, way before I got UC. But before UC I would get these triggers and I would go to the bathroom just once and it was normal. Now that I have UC, these small anxiety triggers make me have to go many times all day. I see the listings pop up (cars, houses), and I have to avoid them because I know what that brings.

Do other people here have the same triggers and have you found anything effective to reduce them?
Posted 5/13/2015 3:01 PM (GMT 0)
You sound so much like me it's scary. I used to use the exact same euphemism of the dry heaves. Anyway, my numbers were around yours and even higher for a while. I just recently had my second loading dose of Entyvio and I'm responding pretty well to it. I'm around 5 a day now. At about the same time I started Entyvio, I also started on Lexapro (anxiety med). I cannot recommend it enough. I really hated the idea of starting it, but I do believe it's helped my UC as much or more than anything else I've tried (which is just about all meds at this point).
Talk to your GI or GP about it. Good luck.
Posted 5/13/2015 4:03 PM (GMT 0)
I think its a pretty ubiquitous phenomenon. For me, I always have issues whenever I know I CANT use the washroom (i.e. when Im in the car, when the bathroom is occupied, etc). The amount of control our minds have on our bowels is incredible.
Posted 5/13/2015 4:18 PM (GMT 0)
How about stronger medications than lialda? Immunosuppressive medications (Imuran, 6mp, aza) are the next stop.
Posted 5/13/2015 4:42 PM (GMT 0)
So you are currently not taking any RX meds? Just prednisone? Get a new GI because that is not standard practice at all unless you stopped taking mesalamine meds on your own.

I strongly suggest you try a course of mesalamine enemas every night (plus oral mesalamine too).
I've been in the 15x/day place and life was pretty bad.
The thing about trying to identify triggers is that correlation does not equal causation. Yes your gut may respond to outside stimuli but a normal gut will not rush to the toilet every time.

It's your colon inflammation that is creating the need for toilet and your meds are not doing enough to reduce the inflammation. Give the mesalamine enemas a 30 day try and I'll bet your 15-20x gets cut in half, esp. if you get back on oral meds.
Posted 5/13/2015 4:47 PM (GMT 0)
Some supplements have helped me but it has been a painstakingly slow process to get where I am today. I would take one new supplement at a time and note how it worked. If it made me worse I immediately stopped. If I couldn't tell much difference I stopped or if the difference was so small it wasn't worth the cost I stopped. If it obviously worked I kept it and tried another one using the same method. I tried to never take more than one new one at time so that if I got worse or better I wouldn't have to guess if it was one or the other or both. The supplements you mentioned have all worked in some with UC but that doesn't mean they are working in you. Are you absolutely sure each and every one works for you? Florastor made me immediately worse. Don't just assume they are helping you because they help other UC'rs. For those that take Turmeric they usually only have success if they are taking 3 grams per day or much, much more. You do need to do something more than prednisone because that only works while you take it and you can't take it forever or it will wreck your body far worse than the UC will.
Posted 5/13/2015 4:50 PM (GMT 0)
Thats pretty much me. Used to bother me in the past but now that I know, I am prepared.
Posted 5/13/2015 6:29 PM (GMT 0)
imagardner2: I have seen 5 GIs and did not like or trust any of them. They don't explain anything, they just say "take this or that". Not like they actually care if I get better or not. I am seeing my functional medicine GP for treatment right now. I have an appointment with a leading GI doctor at a teaching hospital later this month and then an appointment next month with a leading GI at Johns Hopkins. They might say the same thing, "Take Humira" but I'm going to find out.

Mesalamine enemas: I have them at home. I tried and there are two problems: I cannot get it in because of swelling and possible hemorrhoids. Too painful. Then if I do get it in and squeeze the bottle, when that liquid goes in the feeling that I need to expel that right away is overwhelming. I got the suppositories and used a bunch of those and saw zero difference. I know it's not the same as the enema but I don't see a way to do the enema. Oral meds: I have taken a couple large bottles of Lialda and saw zero difference. I took bottles of Uceris and saw no difference.

iPoop: Yes I agree those are the next step but I am trying some other things first. I don't know what the long-term effect would be on my body to take those drugs. Humira is supposedly only 30% effective and it takes a while to find out (right?).

garylouisville: I agree. I don't want to take prednisone at all and at 20mg it's not helping. My functional medicine GP says his father-in-law took prednisone for 25 years (!), is now off, and yes has some osteoporosis but he's fine. I want to get off it as soon as I can and never go back. In the mean time I'm taking it and trying other things before stepping up the ladder to biologics, 6MP etc.
Posted 5/13/2015 6:41 PM (GMT 0)
Have UC said: Mesalamine enemas: I have them at home. I tried and there are two problems: I cannot get it in because of swelling and possible hemorrhoids. Too painful. Then if I do get it in and squeeze the bottle, when that liquid goes in the feeling that I need to expel that right away is overwhelming. I got the suppositories and used a bunch of those and saw zero difference. I know it's not the same as the enema but I don't see a way to do the enema. Oral meds: I have taken a couple large bottles of Lialda and saw zero difference. I took bottles of Uceris and saw no difference.

I completely understand as someone who never had much improvement with RX meds until diet mod+Rx meds finally gave me improvement after 10 years of getting worse and horrible symptoms.

Please try again with the enemas. The feeling of needing to expel it is normal when flaring badly. Start squeezing a little while lying calmly on your side or back. Try to listen to music and relax. If you have to jump up and run to toilet do that but try again with a small amount. It took me a long time to get used to them but they are one of the very few RX meds that actually gave results. Better than suppositories. Helps to warm enema to body temp (under arm is a good place) so no rejection due to that.

Next time try to retain a little more and a little longer. It's worth giving it your best try.
Diet mod. did not work for me the first 3 times but finally it did, little by little.

As far as Lialda I can only say I kept taking oral RX even when I saw no improvement because it helps lower inflammation which is not always related to symptoms we have to live with. But perhaps you can try a different RX and see if it is better.

Good luck. Been where you are, it sucks. I finally found a GI who answered my questions and didn't give orders. She retired but handed me off to a similar GI almost as good. Yay for Johns Hopkins, had my Lasik done there, higher cost but worth the peace of mind.
Posted 5/14/2015 1:21 PM (GMT 0)
iPoop: Yes I agree those are the next step but I am trying some other things first. I don't know what the long-term effect would be on my body to take those drugs. Humira is supposedly only 30% effective and it takes a while to find out (right?).

No, I believe you have your numbers mixed up. Biologic medications improve the uc symptoms of 60 plus percent of patients. Roughly 30-something-percent achieve remission (a total absence of uc symptoms).

No, Biologics work pretty darn fast. Most know within 4-6 weeks whether biologics work for them or not. Either your symptoms show a noticable improvement or they do not.

Remicade has been around the longest, and has a food safety profile. Humira is similar. It's a protein released into your bloodstream, not a toxic chemical.
Posted 5/15/2015 2:14 AM (GMT 0)
Yeah, I get this too ever since I've had UC. I'm still flaring...for me it's not just anxiety, but any heightened emotion. For example the other day I was watching something funny on TV and laughed really hard (which was nice because I've been depressed lately). Sure enough I had to make a run for it. :facepalm:

I can't sing too hard in the car anymore either sad funny I have the opposite car/meeting anxiety - if I'm driving somewhere I get really anxious, but as soon as I arrive and have a restroom available it calms down. eyes
Posted 5/15/2015 2:22 AM (GMT 0)
Yesssss the mind and your gut are good friends and when one goes off the other stops functioning at full potential to comfort it.

I heard self hypnosis helps from my pyscology class.
Posted 5/15/2015 10:26 PM (GMT 0)
I also think that physical activity stimulates it, so I can drive pretty well without having to go, but once I stand up, I have to go--sometimes can't make it from the car to the restroom (which then, of course, makes me anxious!). But I also think it can be mental, too. Sometimes when I'm talking about it, it makes me have to go!

I couldn't do the enemas either when I was so inflamed--it was extremely uncomfortable and pointless, no matter how hard I tried to retain them.
Posted 5/19/2015 4:27 AM (GMT 0)
haveuc- I absolutely have this. Anytime I get anxious its like it goes straight to my gut. stress sucks :( what helps me is yoga. It helps release the stress and create a calmer environment. unfortunately I still am dealing with the anxiety pretty heavy, but I am in your boat if that helps! I get sick immediately when I'm anxious, or nervous. I think deep breathing is very helpful too, but I rarely remember to try that lol :(
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