Do you feel well when you are not in a flare?

Hello,

Interested to hear from people on this. A friend of mine has UC and says she feels well when in remission but this is not my experience as I continue to deal with urgency albeit on 1 BM a day, constipation, probably due to being near to inflammation again, and generally drained and tired. Should I use this as an indication I need stronger meds or is this just how it can be?
Thanks all.

Yes I do.
Yes you do need to keep tinkering with meds and supplements to get more energy.
Constipation really zaps my energy when it happens so that could be an issue.

Urgency is a different issue IMO and for me is related to food/drink intake more than anything else. YMMV.
Fish oil caused a bit off urgency and I haven't used it for a while but that is just one thing I discovered under that category I needed to drop.

Yes now that I know what true remission is, I feel basically 99% my optimal self again. Although the symptoms of my UC were non existent for 4 consecutive months, I was still fatigued and experienced adrenal/joint tension. Turns out I was severely anemic and my hormones were still all over the place. It took an iron infusion, increase of vitamin supplements and intake of herbal adrenal teas to slowly get me back to good health. Bliss is definitely what I feel while in remission, because I know how awful it feels to function day to day in a flare.

When i'm in remission, I still get abdominal pain, acid reflux, muscle pain and fatigue. I've had this intermittent muscle pain while flaring but also in remission that comes and goes without any explanation. Some of this is from the meds and also may have co-occuring IBS. I've never felt the same physical stamina since UC diagnosis unfortunately :-( My blood work is always normal.

I did read that about 1/3 of folks with UC have some chronic pain issues/abdominal pain even when in remission. They think that the gut becomes hypersensitive in many people. For many, feeling perfect is not going to be attainable with a chronic illness.

I don't know if your constipation/generally feeling tired/unwell is even related to UC. You could be in remission and have other issues going on like IBS or vitamin deficiencies. The first step is to find out if you are still in a bit of a flare by running some stool tests or a flex-sig. When was your last scope and what did it show?

Jessa, I have felt fine for large portions of my life since UC. My first year or so was dicey; I was in the hospital a few times, ran from bathroom to bathroom on the job which I eventually quit.

But a few years later I gave birth to 2 healthy babies (was in the best remission ever while pregnant and nursing), enjoyed being a mom in their active years, later took up horseback riding, and later singing. In my work I have performed music and done public speaking. Only once do I remember starting a "gig" a few minutes late because of feeling crappy.

So, hang in there!

I would say that I'm pretty good most of the time , 1 bm, no bloating, nausea, discomfort or diarrhea but I would not say I was back to pre-UC. Before UC I remember I'd be able to hold the need to poo until the urge passed and it wouldn't come back for sometimes a day or two, or when it was most convenient to get to a bathroom, now I'd have 30 mins max, often less. My stool is also not 1 large log but is smaller, skinnier (sorry for the visual but we're all friends here ). I also remember waking up pre-UC with an enormous amount of energy most days, which I get only very occasionally now. So no, I think the fact that o have a chronic simmering disease that impairs my immune system still has an effect on my body, but I'm grateful for the good days that I have and just deal with it as best as I can.

healedtolove said...
I was diagnosed with UC about 6 years ago. Definitely have had a lot of ups and downs with this disease. Went through many trials and errors, trying this and that. Never knew if I was ever going to get my UC under control. I can now say that I have been in remission for the last year and I feel great! I'm also medicine free. I have found what works for me. There really is hope for all dealing with UC.

2nd warning, drop this "email me" business as you look like a total spammer. You're breaking forum rules. Thanks.