Rough day. Feeling beat down.

UCsUCks! said...
I had a really rough day yesterday. Which started w/ me totally flipping out on my brother, and ended 4 hours later really losing it on my mom. (I’m 38, and normally pretty laid back) I’m still very upset today (and I’ve cried for hours and hours). I was diagnosed w/ UC 4yrs ago, 1 yr into steroids (Uceris, and currently prednisone) and 2 months into Azathioprine, as well as 4 yrs on Lialda-4pills a day, Canasa, & supplements. I don’t feel like my normal self, I’m pretty sure I am not depressed, I’m just always beat down, and very “foggy brained”. Every single day. My Dr. is great, I just think she thinks, that if it doesn’t show up on a blood test it isn’t a true issue, or it is something I can figure out/deal with. My family & friends are great I just don’t think they understand AT ALL. (Which I can’t blame them, I didn’t truly understand until my last flare that started May 2015, and I am still dealing w/) My questions are: How can I explain what is going on in my body? (Not just UC, but the side effects of it, mentally & physically, and the side effects of the meds) When I don’t even know/understand what is going on in my brain/body. (For example, the day before I was totally fine, but I could tell when I woke up yesterday I was “off”, shaky/anxious/angry/tired/more foggy brained. I felt “bad” even though I wasn’t physically in pain or anything.) Will I ever have a day where I don’t feel beat down/totally exhausted? I’m very new to this site, thanks for listening.

welcome!
UC is tough and having a support group is really important. I know when I was initially diagnosed I didnt have any kind of support and it was so difficult. Right now my friends are amazing and I see a therapist who specializes in GI, she has Crohns herself so she really gets it. I would recommend doing research on the disease (finding legitimate sites like CCFA and mayoclinic). You can also get online support, although its not the same as a physical person supporting you, it really is great to have the community on healingwell. its also great cause you can ask questions that you wouldn't necessarily ask people in real life, you can ask any poop questions and nothing is off limits here.

as for your treatment, correct me if I am wrong, you are currently on 4.8 mg of lialda, canasa suppositories, azathioprine and prednisone.
what are your current symptoms?
generally steroids are not used long term as they are not safe and cause horrific side effects (anxiety, irritability, water retention and weight gain, huge appetite, increased blood sugar, bone issues, eye issues...)
I am not at all surprised that you are dealing with the side effects mentioned being on pred. you need to figure out how to taper off of them ASAP, you may need the help of an endocrinologist or rheumatologist in your taper because you have been on them for so long. what dose of steroids are you on? ask your GI, why you have been on them for so long?
the azathioprine should be starting to work around now, have you seen improvements? what dose are you on?

fatigue can be from insomnia from steroids, inflammation, anemia, nutritional deficiencies, thyroid issues,

I would get CRP, SED rate, fecal calprotectin (inflammation), iron assay, ferritin, binding capacity, percent saturation, b12 (anemia/fatigue/blood loss) vitamin d (steroids), cbc,cmp, hemaglobin aic (blood sugar over time), and thyroid levels (fatigue) checked.

I am a little concerned that you doc doesn't listen to you, and only to lab tests. they do not always show what is going on.

hang in there ((hugs))

Thank y’all. Yes, I am currently on Lialda (4 pills, I can’t remember what that dosage is), Canasa (and another suppository, a hydrocortisone?), 100mg Azathioprine, 3mg Prednisone & several supplements. I have tapered down several times. Each time it has come time to get off steroids completely (whether it was Uceris, or Prednisone) my symptoms have come back w/ a vengeance. The plan is to be on 100mg Azathioprine for 3 full months, then get off Pred, and possibly up the Aza to 150mg. I am currently at 3mg prednisone (tapered to 3mg in the last few mo). I understand steroids side effects, I just didn’t think being at 3mg would cause what I consider a horrible meltdown on my part (even though, yes I was angry and tired) I would not normally “flip out” under those circumstances. (Although, this was the 3rd time I have had a meltdown in the last couple months) This is the 1st time in the last year I was able to taper to 3mg w/out having my symptoms come back. (Right now I have a small amount of blood/pus in my stool, and 5 or 6 BMs a day, no pain, which is quite an improvement) I feel hopeful that I will be off the prednisone in the next month. I have had basically every single side effect possible from steroids in the last yr. I may have to look in to a therapists that specializes in GI problems, I hadn’t thought of that. I am planning on having my thyroid checked next month. I go back and forth on my opinion on my Dr. She is great. She is a part of the #1 GI group of Dr’s in my city. I am also not the best patient.

I just think she thinks, that if it doesn’t show up on a blood test it isn’t a true issue, or it is something I can figure out/deal with.

You aren't alone in being treated like this, it's the way MD's are trained. They don't respond to what we are "feeling or saying" just what tests tell them is going on. Someday in the distant future we will be treated holistically but not yet.

So it's up to you to fill in the blank spaces that your GI isn't. Since you know that pred causes some of your undesirable symptoms you have to put your foot down and get off it by telling your doctor it is not acceptable. Not sure your GI is doing you favors by having you on it for a year (!) because even in small doses harm is caused to the rest of your body.

UC is a hard disease to treat, GI's do not have real answers except "try this and if it doesn't work then try this other thing." You are the only person that is 100% looking out for yourself, do not expect your doctor to be that person.

What should you do next? Read up about what your alternatives RX meds are at this point so when your GI presents options you will have made a decision and know what you don't/do want to try.

Best of luck. Those people who had an easy time RX'ing their UC are not in this forum, lucky dogs that they are. We are the ones who have had to figure a lot out on our own.

I want to add: ask for Rowasa, mesalamine enema. This can really help you and possibly be the thing that gets you off pred. Much better and treats more area than Canasa, it has been the only RX med that has ever been beneficial to me and many others here swear by it.

Yes, it's inconvenient (because it's not a pill lol). Yes it's takes some getting used to retaining it when you use it before sleeping and may takes a few tries before you feel like you are successful. But please get it and use it for a couple weeks and it will be the best thing you ever did for your UC.