New Member, Diagnosed Total Ulcerative Colitis (Pancolitis) on Xmas Eve

Hi Everyone, just wanted to take a moment to introduce myself -- I've been lurking for a while now, and decided it's time to come out of the shadows.

I don't really want to rehash the roller-coaster I've been on for the past 4 months; it won't change the past and doesn't really help move things forward. Suffice it to say, I was really sick; as sad as it sounds, getting a diagnosis of moderate-severe active total ulcerative colitis / pancolitis (and treatment) was the best gift I received for the holidays because it meant I was finally going to get the help I need to get better.

I'm a 38 year old, mother of two from Minnesota with (what was) a very demanding job as a global marketing manager -- I was working 60 hour weeks, barely spending time with my 8 and (almost) 12 year old. (Somehow, I was still dragging myself to work every day despite 15-20 trips to the bathroom each day with significant bleeding, and the inability to really eat anything solid -- I was literally living on about 600 cal/day of Boost, soup, oyster crackers and the BRAT diet [bananas, applesauce, rice & toast])

For me, without a doubt, the hardest part has been the extreme fatigue. Even with the self-focused, healthy balance I'm creating for my life, I'm still frustrated by the lack of energy I have. I used to do so much, now just going grocery shopping is almost more than I can handle. I'm really curious how others are adjusting to / handle this.

Unfortunately, I'm definitely steroid-dependent. Was feeling pretty good but after 2 attempts at tapering Pred, my doc switched me this week from a combo of Prednisone & Lialda to Imuran & (hopefully, if insurance approves) Entyvio. I took this news pretty hard, because these meds seem pretty intensive & expensive; was hoping I could get by on just the Lialda alone like my mother does with her Crohns (yep, definitely a genetic factor there!)

Anyway, looking forward to getting to know people here -- HealingWell has been a tremendous resource for me as I've been obsessively googling and researching this condition.

Welcome to the forum! I agree that diagnosis was a gift for me too, even though it was sad as well. I hope you have good luck with the new med routine and can slow down a bit, which also helps us heal.

Hi and welcome!

Did you try Remicade? That may be easier to get approval and more people seem to respond to it from what I've seen and read. Have you had stool tests to rule out a pathogen? I work in a similar type of position. I used to work a lot of hours but now I take it much easier. I don't believe any of that has anything to do with my UC, though some do notice increased symptoms when they are under more stress. I had symptoms when I was stressed, or when i was relaxed, there was really no difference in symptoms regardless of whether i worked 60 hours or 0 hours. I stopped working for a period of time and things were just as bad, if not worse. The only difference is that I could stay close to the toilet when I wasn't working and that was necessary.

I had surgery a few months ago and I am doing fantastic. I wasn't going to mention it, because people will say I am some sort of miserable surgery-pusher, but I wanted to let you know, even if the worst case scenario came about (surgery), there can be hope for a positive future. You're far from worrying about surgery of course, but for me, it's been the best possible outcome. I take zero meds. My insurance was Blue Cross and they gave me no trouble about approvals for drugs but it was tiring needing 10k infusions just to get through a day.

Thanks for all the warm welcomes, everyone! It's so nice to have people who truly understand what I'm going through -- friends, family & co-workers have been incredibly supportive, but they aren't living the day-to-day reality of this condition. And seriously, if I have one more well-meaning person give me diet advice, I think I might lose it! :-D

To answer some of the questions: Yes, have had all the stool tests, no pathogens found. The reason my doc wants to go to Entyvio has more to do with the latest research and an improved side-effect profile. Because it only targets the immune system in the gut, it will have fewer systemic effects. I am fortunate to be seeing an IBD specialist at one of the top-rated GI practices in the country; my doc is extremely involved with CCFA, and to be honest, I think he just wants to try it. ;-)