Overall health and symptoms

I was diagnosed in January this year and it's been difficult since. I don't know anyone that has this so I came here hoping to find out what people do to ease certain symptoms or vitamins or things like that. I still bleed when I use the bathroom. I've been on steroids for a couple months now and those overnight enemas. No change really in that. My stomach now almost feels like it's burning. Along with some severe gas. I eat from my small list of foods that I know I can eat and usually it's okay but sometimes it hurts like crazy. My doctor doesn't really seem to care to much but prescribe more medicines. So for any natural healing ways I'm open to hearing about.

Lauren, get a second opinion from another gastroenterologist if yours doesn't care. Uc has many medications to try. If you're current symptoms aren't improved by now then it's time to change your prescription and doses. Generally, they start you on anti-inflammatory medications one is oral and up to 4,800 milligrams a day asacol/lialda/apriso/pentasa/salofalk/delzicol and the other is rectal route of up to 4,000 milligrams a day, like canasa suppository or rowasa/pentasa/salofalk enemas. Not everyone responds to the anti-inflammatory medications, sometimes much stronger medications are needed like immunomodulators (e.g., Imuran or 6mp). You've got to be aggressive in your treatment and find the right treatment plan for you. As uc symptoms are horrible.

Natural treatments might help reduce your symptoms some, but combining that with prescriptions is your best course, in my opinion.

Thank you guys I feel pretty lost on where to go from here. I will try to contact my doctor again to see what I can do. I've been bleeding a little less lately. The fatigue and weakness is one of my biggest complaints. I've dropped about 10 pounds which isn't so bad. And I know I'm dramatic but sometimes I wonder if I'm dying. I get abdominal cramps and gas. I need to figure out how to go about my life normally again. Yes I need to know where the restrooms are and have my own food with me. I just want to know what else people do to live normal lives

I agree a doctor who's got more compassion is a must.
You could also look into kefir a yoghurt style drink that's full of probiotics.
I've been drinking it for a week now and its really helped my bowel movements reduce.
Do some research on it before drinking
Its commercially available or you can DIY-I just do the store stuff.
Meds too of course.
Rest lots of water and less stress too if possible

That diet sounds rough.
Have you tried overcooked vegetables?
Personally garlic doesn't work well with my system but most veg is fine.
corn was rough even before my UC lol

Lauren:

Thought #1:
Is your GI doctor an "IBD" Specialist? Not all GI doctors are...

It can be good to find one. (I'm in the process of doing that too, based on advice I saw here.)

In the meantime, UC needs to be treated 'from the top AND the bottom'. e.g. oral 5-ASA meds and rectal 5-ASA meds (suppositories and/or enemas).

Did they say how HIGH your UC goes, based on the biopsies? Is it Pancolitis (AKA all of your 6 feet of colon)?

Thought #2:
NB Your post says you have been on steroids 'for months'. That is very concerning.
Usually a GI doc wants to get us tapering off them -=ASAP=-, due to them being so damaging to our bodies, in the long term.

Did they say that they have a *plan* for this? e.g. getting you onto the immune modulators? (take a 3-6 months to work), or biologicals?

My flare was about the same time as yours (mid Feb) and my GI guy had me on Azathioprine since April. Good to get on that, or 6MP, ASAP.

Talk to your GI Doc about their 'long term plan' for you.

Post Edited (emmalouwho) : 5/10/2016 6:15:16 PM (GMT-6)