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Ulcerative Colitis
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Posted 12/14/2013 2:47 AM (GMT 0)
So after over a month of increasing issues, a diagnosis of Crohns, followed by a retraction of that and a second colonoscopy a week later, I find myself now labeled with mild to moderate active Crohns. Here's my story if it gives anyone ideas for me!!

We moved to a new state, new rental home with well water, new awesome job, but a ton of financial woes from a 6 moth bad luck streak. Always been the healthy, organic vegetarian leaning people, though we "cheat" when stressed....hence the last 6 months of carbs and crap. Halloween came and though things are looking up, I fond myself totally binging on candy...started getting weird gut noises and occasional super painful diarheaa. So bye bye candy. Didn't matter. Few days later hubby and DD experienced the same, got better in a few days. I started having weird mucus and missing work. Went to ER with no insurance I was so freaked out, got a week of antibiotics and a negative everything stool test...more like mucous test. Week later, ta-day blood, more pain, more missed work.The day my insurance kicks in I go to ER and CT scan shows colitis in my lower colon. Sen home with cipro and flagyl and a referral to a surgeon for a colonosocopy. After 4 days stop taking antibiotic because I'm so sick from hem and want to talk to specialist first. Surgeon does colonoscopy, says he cant finish it becuase of a tight turn, but he saw fissures so I have Crohns, give me Lialdia and hydrocodone and a referal to GI. Week out of work. Saw GI this week, he said there's no way I can be diagnosed with Crohns based on that info, tells me to get my water tested and come for another colonoscopy. Three days later its done and here I am...they are doing a biopsy for bacteria and amoebas in case that set me off (DS has diarhea now...) gave me a light dose of prednisone....scary, but if i gets me back to work okay....and kept me on Lialdia and hydrocodone until I see results.

Its still wierd to me..never had any issue like this before...

Started SCD too, though GI said its kind of meh and that when his patients try to go off meds, thats when serious issues start. Not suprised there. I like the guy though...he listens, addresses questions and has a good bedside manner...so hopefully I can trust him because I'm so confused. He seems so confident the pred will work and in a few days I'll be back to life, and that the Lialdia will keep me there. I've read so many stories of that not being true that I can't help wonder if he is just trying to be nice!

So here I am...confused and probably going to drive everyone crazy with questions like I was doing on the Crohns board!
Posted 12/14/2013 3:24 AM (GMT 0)
I'm new to all this too, so I can't offer any advice or anything but I can relate to your story. I too have been suffering symptoms and the doctors end up with more questions than answers. I was originally told I had an infection...that never showed on blood tests or stool tests...but they treated my "infection" anyway with 10 days of cipro/flagyl. I'm not exaggerating, I thought I was going to die. Those meds made me feel so sick, no appetite, no energy, nausea, worse diarrhea than before etc etc. I lasted the ten days thinking surely this would cure me. It didnt. Things got worse and worse until I ended up in emergency, had next day colonoscopy in the hospital, visible inflammation, ulcers, but biopsy came back with no IBD markers...so they said its likely from the infection...and or meds... So, in my words-the meds you gave me to treat the infection i never had? Now I'm being treated for the inflammation etc with UC meds, and then have to wait and see if it comes back after I stop my meds (this is their plan, seriously).

This board is a great source of information. I hope you can find some help here, and that your drs are able to give you some answers. Just know, you're not alone.
Posted 12/14/2013 5:34 AM (GMT 0)
So glad your doctor seems helpful... first colonoscopy sounded terrible! Sometimes doctors are so weird.
keep pestering them, asking questions and doing research online.

You are saying that other members of your family are also having symptoms too?
Posted 12/14/2013 2:41 PM (GMT 0)
Pred is very effective but should only be used as a short term fix. If Lialda is effective for you then supplementing with Rowasa enemas might really help. There are many UCers here who take a maintenance drug such as Lialda or Asacol and remain in remission with rectal meds as needed. You can follow our signatures to see what works for each of us. You will find that almost everyone recommends mesalamine enemas with rave reviews, except for me since I am allergic to mesalamines.

Our signatures indicate that other really popular supplements for most of us are vitamin D, fish oil, PROBIOTICS, and a soluble fiber such as psyllium. Get your blood levels of vitamin D checked, and while you are at it check B12, folate, and iron since you have been losing blood.

I am a strong believer in diet affecting UC but official diets never worked for me. Many of the foods that are illegal under SCD, Paleo, Makers, etc. are perfectly fine for me, and other foods that they consider OK will trigger flares. I guess because everyone is different.

So I prefer a food diary. Two very common triggers are gluten and dairy. I suggest avoiding gluten for 2-3 weeks to see if your symptoms lessen. Then try the same for dairy. Many veterans of this disease, whether they believe in diet modification or not, find that their lives are much simpler if they avoid certain foods.
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