A Few Different Questions (Flares w/meds, New Doctor, etc)!

Hi all-

It's (thankfully, no offense!) been awhile since I've been around these parts. I've taken a much needed break from the world of Crohns, however, unfortunately, my body has cruelly decided to drop me back into the depths of doom. Ahh well, such is life. I am hoping to get some help with a few questions!

1.) Flaring on Medications
--I have been on Lialda somewhere in the range of 4-5 years. It's worked generally okay, but lately, I have found that my symptoms are much less predictable. One day, I am fine, the next, I have a bunch of BMs. Then, I am constipated. Then, I feel like I am never empty. Has anyone found that their flaring on a med that worked from them was much less...predictable (? does this even make sense)? I feel like I am flaring, but don't seem to have a pattern. Things just come and go, and I feel like my body is unstable.

2.) New doctor
--I am going to be going to a new doctor (which makes me quite sad, as I loved my old doc) due to a move. Anything you suggest when going to a new doc? I definitely need a colonoscopy (I was supposed to have one before I left, along with an endoscopy, but it was cancelled). I'm nervous and already sad about leaving my old doc, so any suggestions or questions you suggest I ask would be great.

3.) Constant checking
--Does anyone ever constantly feel like you have to run and check your underwear to make sure you didn't have an accident? I always feel like I am about to have an accident, even when it is just passing gas.

4.) Final question, I swear! Acid reflux
--Anyone have experience with Crohns+severe acid reflux? I feel like there is a constant lump in my throat that I can't clear out, I have the burning, etc. They were going to do an endoscopy, but it was cancelled, so I will request one by the new doc. I would just love to hear what people are using/any thoughts on treatments so I know what to expect.



I apologize if I am breaking any new forum rules with my post. As I said, it's been awhile! I've been lurking for a few weeks now, but am hoping to start participating and helping where I can. I'm coming up on my 5 year anniversary of Crohns, and thinking about buying myself a colonoscopy and endoscopy for it ;)

Thank you so much for this response, scifigal2k!

I've never been diagnosed with anything related to acid reflux, so hopefully this doctor will be able to help. Thanks for your thoughts on omeprazole as well!

Yeah, that's what I was thinking about a new med. My previous doctor (who was very against using the humiras/remicades of the world if he could avoid it) was talking humira, so I'm already a bit nervous to be honest!

That was my thought as well. Unfortunately, there isn't much of a community for Crohns where I moved, and the CCFA meeting isn't until the end of the month! I used online reviews...which I've had luck with before, but who knows. *Fingers Crossed*

Thank you for your response, I really appreciate it!

Hi Girlzilla and welcome back, but sorry you need to be here! I have IBS along with my Crohn's and your descriptions in #1 is my normal state of being. The good thing about getting all the tests is that it will help you distinguish what is actually disease vs symptoms which may or may not be Crohn's related. I have GERD. I have no idea if it is related to the Crohn's, but I take Dexilant and it helps a lot. ccfa.org, the Crohn's website does have a doctor referral section if you are living in the US. Make sure you have a copy of all your medical records sent to whoever you choose and I suggest keeping a copy for yourself. My GI has a really kind personality, but he is overworked and can be a bit ditsy. I find it helps if I stay on top of my own disease progression. I love him because he's easy to talk to and will let me argue my points and then he'll share his own reasoning. Ultimately he lets me make decisions about my care, and I really value that in a doctor. Good luck with everything

Hi gumby44!

I actually remember you from way back when I was last here, so thank you for responding to all of my questions :)

My previous doctor did somewhat suggest possible IBS, but it was never really diagnosed or pursued. How were you diagnosed with the IBS, and if you don't mind me asking, how do you control your IBS?

I've never been certain if my Crohns+Acid Reflux were related, but suspect it as I have had oral involvement (I tend to get quite nice canker sores when flaring). Hopefully I can either get a GERD or other diagnosis to offer some treatment/relief. Thanks for the thoughts on the Dexilant as well!

I unfortunately live in a terrible city for GI doctors, so my backup plan is to go to my local CCFA meeting this month and get recommendations there if this first doctor doesn't work.

I have actually never asked for a copy of my medical records...so that's really a good thing to do. I am going to request them ASAP, as I would love to see what's in there.

I loved my most recent doc for the same reasons. He kind of let me work out my own treatment path (with his approval) and pushed for me to find what works for me. If the drive wasn't 4 hours, I would consider staying on with him :(

Thank you so much for taking the time to respond and share your thoughts. I truly appreciate all of the advice!

Hi Joy! Thanks for the warm welcome :)

Mind if I ask if you ended up treating your upper GI issues? I've been trying to avoid foods that might cause acid, but it seems to do no good.

Haha, this move was actually designed to reduce stress! I'm back living with my parents and working at a much lower stress job, so I was hoping my Crohns would play nice. Unfortunately, it's been almost 2 months and I am still on the rollercoaster. Have your symptoms always been unpredictable? I feel like many on here have the same symptoms daily, but mine seem to vary constantly, and I never know what the day might bring.

I'm so very sorry to hear of your recent losses. :( You have my deepest sympathies. Remember to bring yourself back to that front burner every once in awhile. Can't have your pilot light going out!

hi girlzilla,
Given that you have Crohn's colitis, my guess is that your symptoms are more from that than IBS. I hope you find a good doc.