So frustrated, just need to vent

I’ve only had my UC diagnosis since March of this year but have been dealing with symptoms since 2016. Purely fear and negligence on my part. I will admit that I haven’t done a good job of standing up for myself with my health, both with the UC and with other previous issues (hair thinning, back/hip pain), where I’m very quick to just accept whatever the doctor says.

Perfect segue into my frustration with my gastro. I saw her the other day and the appointment left me never wanting to see her again (so dramatic, I know). I appreciated that she was open to trying budesonide because I had a rough time on pred, and I told her that things are better now than when I was down on 5mg, but still not great.. and for some reason she decided to taper me off. I assumed it’s because I’m back on mezavant? On a related note she asked whether I was still taking it, which I wasn’t because she never told me to! She told me that I was wrong and when I pointed out she never gave me a script for more, she said she usually prescribed with 3 refills. So I apologized for misunderstanding and got so upset with myself because I figured that’s why things weren’t great. But I had no refills at the pharmacy!

I’m also frustrated with my family. I love them and they have been great about helping me through this but they are so focussed on “how I deal with stress”. Even before my colonoscopy, they would go on and on about how I have always dealt with stress in different ways and that my digestive issues were probably a manifestation of it. I don’t know how many times I can tell them that managing my stress isn’t suddenly going to make me feel better! Sure, it might help, but if relieving stress is all it takes then symptoms would go away on vacation etc. I was on vacation with them for a week and they saw it first hand— missing out on excursions because I felt a BM coming on and knew I wouldn’t be able to hold it or deal with the cramping, often running back and forth to the bathroom, spending lots of time on the toilet.

More than anything though I’m frustrated that I’m being treated and not getting better. Don’t get me wrong, things are WAY better than before. I have really bad mornings maybe once or twice a week, compared to almost daily before. The number of BMs is down although it’s tied to urgency 75% of he time. When there is pain, it is less than before, I remember it bringing me to tears and/or bringing on nausea. But the bleeding is back and almost as bad as before. BMs are still extremely soft, but from what I’ve read on here some people never get back to a 3/4 on the Bristol scale. I just want to not see blood and be able to hold in a BM when I need to.

To top this all off, I know in the grand scheme of things it’s really not that bad. I don’t have cancer or a terminal disease. I’m very fortunate to have an employer-funded insurance plan that covers most of my meds (thank god bc where I am the mezavant would be prohibitively expensive without insurance). Even compared to other people with UC my symptoms are pretty mild. My problems are really not that bad which makes me feel worse or guilty for complaining and venting.

Thanks for reading, I just needed to vent where someone might actually understand how I’m feeling lol.

Post Edited (Ewok89) : 5/30/2018 4:31:53 AM (GMT-6)

Ah yes, families. They mean well but don't even come close to understanding UC or suggesting the right things lol. We've had many people over the years say their spouse, parents, and family are suggesting ridiculous things that can't possibly help, and they are frustrated with them. It's an antiquated, entirely-wrong 1960's-mentality, blame the patient as it's all within our heads *shakes head*.

Unfortunately, there is a lot of trial-and-error in initially treating UC, and it is also very frustrating. Often our doctors do not get it right the first, second, or sometimes even third time. Being your own best advocate for what you need to be well is an essential skill to have with UC. If you are not in a remission (that is a complete absence of UC symptoms) then you need to fight to get there, as you are essentially pre-uc, without urgency, and can go about your day without the slightest worry about bathrooms or UC in a remission. "At least it's not as bad as before" is a trap, if you have lingering/simmering inflammation then it is only going to spread in extent and severity and blowup into an awful flare.

You should be on 4.8 grams of mezavant a day, and also be on a nightly 4.0 gram mesalamine retention enema (salofalk/pentasa/rowasa enema). If you are not, then insist on a prescription for higher dosages and/or the enema. If that is not enough then it is time to try stronger medications like immunomodualtors (azathioprine/imuran/6mp) or biologics (remicade/humira).

Quality of life is what it's all about with chronic illnesses like UC, and you've got to strive for the best you can attain. Nobody wants to live in purgatory for many months or even years, as that's just a huge waste of time. Be aggressive in your treatment, find a solution, and move on with your life without the urgency and frequent bms

Ewok89
I echo the statement about well-meaning family and friends. I've been given books on stress and spiritual healing that didn't do anything to stop the urge to use the restroom. If only they worked!