New here... unfortunately!!

Hey there... my name is Heidi and I live in MA.  I just turned 36... and although I haven't been diagnosed (again), I'm about 80% I have UC. 

 

A little history for ya...

 

When I was 12yrs old I was diagnosed with UC (after almost a YEAR of Dr's trying to figure it out), I had a barium(sp) enema and it was then that I was diagnosed.  I was on some kind of steriod for about a year. 

 

I've been "okay" since then (over 23yrs!) but have always had a "sensitive stomach" and have never liked spicy foods.  I've eaten enough to become pretty overweight actually! 

 

SOOOOO... fast forward...

 

Since the very beginning of Sept ('07) I've been sick sick sick.  At first I thought it was some kind of a virus since it would come and go.  Every 2-3 days I'd be EXAUSTED... and stuck on the toilet.  As time passed... I began to realize that this maybe WASN'T a virus since my hubby nor my kids have gotten it... and I've been getting worse and not better.  

 

It's at the point now that I don't eat much of anything... I had some white bread and a couple spoonfulls of cottage cheese today... and I drank 2 bottles of Ensure.

 

(The only PLUS to this whole thing is that I'm losing some weight...)

 

I saw my regular Dr about a week and a half ago and she took bloodwork... my liver function is "off", so they'll do that again.  Everything else with the blood looked good.  At her request I brought her (several) stool samples but those wont be back for another week.  She wants to rule out parasites etc. 

 

I found a Gastro office and called them MYSELF today and the "soonest" they can get me in is DECEMBER 3rd?!?!  I don't think I'll make it until then, so hopefully, my regular Dr has a little pull and can make an appt happen sooner than that. 

 

I'm NOT looking forward to the inevetible colonoscopy... yuck.  I don't mind the procedure itself since I'll be 1/2 way out of it, but I really don't think I'll be able to drink that "stuff" the night before.  Is it still as horrible as I remember???   

 

So LIVING with this hasn't been fun... I'm a WIFE, I'm a MOM of a 4yr old and a 3yr old AAANNNNDD I operate a home child care to three additional children M-F!!  It's not easy to do that and run to the toilet 10+ times/work day!!  My hands are RAW from washing them so much. 

 

So... that's my story... so far.

  -Heidi

Hey and Welcome! There is a ton of information here so if you have time you may want to peruse the posts. I definitely think it would be worth it to see if your primary can get your GI appt. bumped up. That is a long time to suffer.

Foodwise....diet doesn't affect my UC. However when I am flaring I eat lots of bland food. Applesauce, baked potatos, hummos and pita is my fav. I drink Carnation Instant Breakfasts w/ lactaid milk to get extra calories.

I have a 2 year so I can't imagine being in the potty all day and taking care of lots of kids!

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Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

https://www.healingwell.com/donate
Co-Moderator UC Forum

Heidi, welcome!

Sorry you are not well. Everyone is different, and responds differently to different things. However, I was putting myself in your shoes while I was reading about your diet, and what you are eating would have definitely sent me to the loo all day, especially the bread...(yeast). My suggestion, eliminate all grains, including corn, processed foods, and sugar (refined and artificial sugar). Instead, eat all veggies, berries, meats/poultry/fish, plain yogurt, nuts-NO peanuts, (whatever you can tolerate)to your heart's content, and see if you don't notice an improvement in your symptoms, maybe even within a week. Your symptoms may have a fungal etiology. Were you ever on antibiotics or birth control pills? -or ever live/work in a moldy,mildewy environment? After I figured out the cause of my UC symptoms (fungus/yeast), I got well again. Hopefully the tests will tell you something, but they won't tell you if you have a fungal problem. That is something you have to experiment with, following an antifungal program for awhile. Take care. Keep in touch.

Kim

I'm seeing my primary again on Tuesday... she has to RE-test my blood since my liver function was "off" and has to do a pap.
I also have a call into her... she needs to tell me what the HECK I'm supposed to do until I see a GI doc?!?! Hopefully she'll be able to
get me in to see one sooner than Dec 3!

You might broach the subject of the dreaded pred with your GP. You need to get this under control if you're a mom and others are relying on you -- and you need to get it under control for you, of course.

When I was diagnosed, I was so ill, mostly because no one knew what was going on and my GP didn't prescribe pred. I just got sicker and sicker, couldn't work, couldn't function, and ended up in the emergency room from dehydration. A script for pred was definitely in order; I should have insisted. Certainly you can't continue on without relief until your colonoscopy. By the time I had my colonoscopy, I had spent the previous day in the emergency room getting three bags of fluids, and all I remember from the colonoscopy is screaming STOP as soon as she started because I was so inflammed. The GI gave me more drugs after the scream and I don't remember anything else of the colonoscopy. Oh, and she also gave me a script for pred. It was too little too late. I should have been on it weeks before.

Hang in there.

Mitz

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Sporadic proctitis since about 1985. Mother had UC, then J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Prednisone, two courses of Flagyl, then Vancomycin finally got rid of it. Symptomatic with UC after that.
Colonoscopy in 2001 dx'd left-sided UC. Was pretty darn ill at that time. Treated with prednisone, Rowasa, Asacol. Asacol not working so switched to Imuran. Three small flares since in 2002, 2005, and 2007.
Gall bladder attack 6/13; ultrasound showed stones; surgery before end of 2007.
100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression) daily.