Just diagnosed

I was just diagnosed with Lymphocytic colitis... After a long road of tests, scans, scopes I finally have a diagnosis. I am 42 year old woman. I'd like advice on other's experiences to help me relate... I haven't kept food in me for over a month, lost alot of weight, severly anemic, low potassium.. How long does it take to "join back into the real world" again? I feel like my life has been home, starving, bathroom, rest these days....

Hi AMack and welcome to the community!

I've been diagnosed with Lymphocytic Colitis as well, so I feel your pain We have a subforum dedicated to it here: Microscopic Colitis -- if you want to join the rest of us.

Your doctors will probably tell you that for some, it is self-limiting and goes away after awhile. I don't appear to be in that group as of yet and many others seem to struggle as well. Some days or even weeks I begin to think, "This is it, I think it's finally going away!" and then weeks like this one happen and I get frustrated and discouraged.

What medications if any do they have you on? Did they discuss dietary changes? How about ways to reverse those nutritional deficiencies?

Just wanted to pop in and say 'hello' and welcome to the forum, you have definetly come to the right place to get lots of helpful info and support.

I was also wondering what treatment (if any) they have started you on?

AB
xx

They have me on Entocort. I seem to be doing better on the tummy level, however, I am experiencing alot of fatigue and headaches.... One thing that started happening before the meds, was, I started losing my hair, quite a bit... The doc thought maybe from malnutrition, but it still is happening... has anyone heard of this before?

Hi, a side affect of Entocort can be increased hair growth. Re mal nutrition resulting in hair loss, there would be some logic with that.

Has you doc done any vitamin level checks? If not I would ask them to do this especially if they already thinking that you are suffering from malnutrition. Just to confirm the fatigue and headaches - is this since you started the med or also before?

I dont think a full vitamin level check, but he did bloodwork indicating severe anemia and low potassium... The headaches have been since I started the med.

Have you made your GI doc aware of the headaches? Also I would ask what they checked on the blood work and to do the vitamin levels.

I agree with AB. Get those vitamin/mineral levels tested. With what you're describing, big ones would include vitamin B12, magnesium, and vitamin D.