Nothing but negative emotions as I lay in a hospital bed (with solumedrol injections every 6 hrs into my IV)for the 5th time in 18 years fighting this disease. I am at my lowest. I am weak from not eating, crying uncontrollably and seeing nothing but bright red blood all day.
Some more about me:
I am an East Coast girl. I love the water and all water sports. I am usually a very positive person, but I am also very impatient (especially with my body!). I am a small business owner with a degree in accounting. I have a 21 yr old son and a great husband. I love going to wine festivals, concerts, and traveling. I am trying to teach myself Italian because I love languages. I think I want to write a book when I grow up.
Right now I am in a flare consisting of nothing but clots of blood every few hours.
More Poison? Or “the bag”?
I’ve been dealing with this disease for 18 yrs. I am 45 now and tired of it ruining vacations, work, and life in general. I am currently typing this from my hospital bed. This is my 5th time in the “clink” on solumedrol and bowel rest. The first 3 times this therapy worked and I was able to maintain off and on years with remission. But now my body is prednisone resistant, as I found out last time when this therapy didn’t work, so I took 2 infusions of remicade in 2011. What a miracle drug. I was in remission the next day. The problem was after the 2nd infusion, I developed inflammatory pneumonia & bad toenail fungus so I had to stop.
Everything was going well and I was taking my Asacol until they stopped making it! Really??!!! Why would you stop making a drug that was helping? I was switched to Apriso at apparently a lower dose than the Asacol I was taking. Could this have attributed to this latest flare? Could the egg nog martinis I was drinking over the holidays have attributed? I foolishly let myself believe that whilst in “remission”, I am “cured” and tend to lead my life “full steam ahead” like the classic type A personality that I am. Now my GI is talking about Humira & if that doesn’t work, I have no other options. I am scared to death to try Humira because of my scary experience with Remicade, but what quality of life do I have if I am on a bag????!!!! Is anyone else out there left with just these 2 completely life altering options??
In addition to prednisone, remicade and apriso, I’ve tried bosweilla, slippery elm, msm, fulvic acid, iodine, aloe vera, cucurmin, fish oils, mega vitamin D doses, but this was all just recently and while in the midst of this awful flare so I have no idea if these things would work at keeping it at bay, but they do not work for a full blown flare. I am also studying about Ph levels and how that affects things. I’m sick of being sick and having no options.
written by Becka K
“I have been to this website before several years ago, and it wasn’t as “busy” as it is now. Are you noticing a very scary trend upward of cases? What are your thoughts on this?”
Thanks so much for venting. And thanks for re-visiting the site. You ask a question that is maybe one of the best questions in the UC world. And I for sure don’t have an answer for you on that. If I had to place a bet on the question, I’d bet the answer is “yes” to the upward trend thinking. But that would not be based on facts but rather the reality that too many folks are making the wrong moves in the grocery stores and stressing themselves out to much in life which I think surely can hurt potential UC’ers. But, again, my opinions, and there’s alot more to the thinking there.
But who gives a crap about trends, let focus on you. Where you’ve been, what you’re up to, and where you want to be. You wrote up top:
“I love going to wine festivals, concerts, and traveling. I am trying to teach myself Italian because I love languages. I think I want to write a book when I grow up.”
So, let’s break it down right…
Wine festivals: Great, sounds like fun. For me though, I just wouldn’t be taking part in the drinking part. Or maybe just super mini-sips if I had a gun to my face. Or heck, maybe you could just smell the wines and get your kicks like that?? I don’t know, but I for sure think wine and especially wine over-dosing can jack up people’s UC symptoms in a major fast way. Some UC’ers are cool with wine, but many are not. So get your beak out and start smelling that stuff like crazy?
Concerts: Perfect! Go! Have fun, get your dance on, drink some bottles of water (not $10 beers which often (as in really often) mess up people’s UC symptoms:( But surely no reason you can’t get concert tickets whenever you like and have fun there. When you get your UC in remission, concerts are hard to beat. But again, and you probably know by now I’m big into treating UC with food…STAY AWAY from the crap food that is almost always for sale at those type of events. Pretzels, hot dogs, BS Pizza….just don’t mess with it. Better to go hungry than jump into that disaster.
Travel…: I don’t even want to try and attempt to answer this one, but 100% for friggin certain, if YOU want to travel and you think your UC is always going to stop you from doing that. WRONG. So sorry. Not the case. I’ve been diagnosed since 2008 and after getting my UC under control have traveled like a ramblin freak show for quite some time now. Heck, my wife and I have been living in a sailboat sailing the east coast and Bahamas the past 6 months, and were living in a VW van for 8 months before that bustin 15,000 miles and 50 plus campgrounds…and before that we trained it from Czech to Slovak to Hungary to CRO to Sloveners to Ital. Don’t get me started girl. YOU want to travel along with your UC. YOU can do it. And for sure, travel is the best education out there, and if you keep your ears and mouth open, you’ll meet some other UC’ers along the way. Don’t you even get me started with UC won’t let you travel.
So back to you. I’m pretty pissed off that its taken me over a month to get your story posted, but the reality is this site is much more heavily visited these days then it was back 5 years ago when there were only a few thousand people visiting it each month. And, I’m way behind with many others (but don’t worry, they be a coming UC’ers).
So how are you doing now Becka? Are you out of the hospital? Are you trying out some new medications? What’s the deal?
My biggest suggestion to you would be this: If you haven’t given diet a try, and I’m talking about a real good college try, then you might be like me and benefit from diet changes.
One thing I’d absolutely not be doing which you asked about is the Egg Nog. OUCH. My stomach just FARTED out a fattie just thinking of that stuff. Yeah, tasty, but come on. That sheeeets just begging for a flare up.
Let us know how you’re doing and don’t for a second think things are over for you. They simply are not. And unless you want to pick a fight with a dirty freak from New Z Land (Peter that is and read his stuff too-here). Rest better knowing that “the bag” or other surgery options are not the end of the world either.
Best regards East Coaster,