Ulcerative Colitis Tips


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More Poison? Or “the bag”?

Becka w fIntro:

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.

Symptoms:

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

Adam Scheuer iHaveUC founder April 23 2014.  Southport, NC

Adam Scheuer
iHaveUC founder April 23 2014. Southport, NC

Ask Adam:

“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?”

Becka,

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,

-Adam




8 Responses to More Poison? Or “the bag”?

  1. John A
    John Augustat April 23, 2014 at 6:13 pm #

    Becka,

    Sorry to hear of your recent flare and emotional pain. Life can completely suck with UC, but we need to keep things in perspective and realize there are always people in worse positions. Try and stay positive!

    I need to inform you that Asacol is the EXACT same thing as a newer drug called Delzicol. The patent for Asacol ran out and your doctor should have prescribed Delzicol. Pull apart the plastic cap ends of the Delzicol tablet and what appears…a rust colored Asacol tablet without any writing on it. No BS. They are one and the same.

    Hang in the girl! Hope you can get on Delzicol and start feeling better.

    John

  2. Marlee April 23, 2014 at 8:51 pm #

    Becka, I sincerely hope that if this story is several months old that you are feeling better by now. Thank you for sharing your thoughts and your pain. Adam, I could not agree more with your comments on Becka’s story. While it’s heartbreaking to hear of someone suffering with this disease, it always amazes me when people say they have tried everything, but yet refuse to eliminate certain things from their diet/lifestyle which are known to be a problem for so many with UC!!!! I guess for me, if I ever find myself in that place where I’ve tried every last med./supplement out there and I’m still bleeding, I also want to be able to say I’ve tried all the dietary changes so many people have found helpful! Was it frustrating to have to decline a glass of carbonated grape juice at a recent birthday party? Yeah. But I’d much rather drink water and know that I did what’s best for me and my disease. Do I have THE answer for UC? No. Do I know for sure that eliminating milk, eggs, and coffee with sugary syrup flavorings from my already vegetarian diet has improved my symptoms? Yes! (Getting rid of those things cut my bathroom trips in half within a couple weeks!) Therefore, I will no longer put those things inside my body. Ever! I’m still in the process of figuring out what other things are triggers for me, but I know I do much better with simple, plant-based food. Am I cured of UC? Not yet. :) But after 20 years, I haven’t been hospitalized or had to take any of the heftier immunosuppressant medications either. Best wishes to all of us searching for a cure.

  3. Bryan C
    Bryan Cook April 24, 2014 at 7:30 am #

    Becca,

    Im sorry to hear that you are going through so much with this shitty disease.
    I had Ulcerative Colitis for 15 years and I feel your pain and the toll it takes on your body and mentally too. I was on every drug and the only one that worked was prednisone and every time I tried to tapper of it I got sick I live in the hospital l. I got to a point where nothing was working anymore and it was time to say bye bye to the old colon. It took me a couple years cause I was scared to death and didn’t want the surgery. Finally I said it was time couldn’t live like this anymore in September of 2013 I had a total colectomy where they took out all of my large bowel aka colon. It was the best thing I ever did. I had my life back no more having to worry about what or where the

    • Bryan C
      Bryan Cook April 24, 2014 at 7:37 am #

      bathroom was and no more meds!!! Then new years eve I had the Jpouch created its a 3 part surgery if you choose that route its reversible so eventually you wont need the bag anymore. Talk to your GI guy to see if your able I haven’t had my last yet but Its soooo much better and the bag isn’t permanent. If you have any questions there are lots of people to vent to and you can email me brcook2323@yahoo.com.

      STAY STRONG!
      Bryan

  4. bev April 24, 2014 at 5:21 pm #

    First…I agree with Marlee’s post up above. When we UCers do get into remission, we can tend to think that we can just live like ‘normal’ people and plow on through life eating and drinking things that we know we probably shouldn’t.

    We cannot take advil, we cannot drink alcohol….CANNOT. I don’t care what anyone says. Alcohol causes gastric bleeding…EVEN in normal people who don’t have UC, but in them, it goes unnoticed. Also there are many foods that can affect us individually as well. Each of us has to identify those foods and totally avoid them.

    I WILL NOT put any more poison in my body. That I know for sure. I am convinced that ALL of the meds for UC are basically poison. Asacol included. I was doing sort of okay on asacol for almost 15 years…until I realized that it was causing a lot of not so good side effects.

    I hope that you are feeling better.
    Just FYI, I am in remission (and on NO MEDS AT ALL) on that good old ULTIMATE FLORA CRITICAL CARE probiotic by RENEWLIFE and powdered fermented L-glutamine. I swear by these things. I have been di8ligent…I never ever miss a dose…I never drink alcohol or pop or eat too much other sugars. I have maintained this remission for almost 3 years (except for a very brief flare after I got a flu shot this past October, which I also won’t be doing again). I have never had remission this long. I will not become complacent…I will adhere to what is working to the letter.

    If I ever flare again, and can’t rectify it on my own, I will opt for the surgery for sure. No more meds for this gal…they can cause to many other health problems…some that are irreversible. That’s just my two centavos.

    Cheers,
    Bev

    • Wunderer April 26, 2014 at 6:09 am #

      Bev, wish you and others continued good health. You’re so right about what we consume. Adam makes that point on junk food as well. There is no better first step for a person with UC than diet. That should be emphasised more than enough. I always keep in mind that I’m not depriving myself of something but empowering myself. Be the shepherd, not the sheep: that should be our mantra. Our taste buds will change as well. I recently cheated with coffee and it didn’t taste like it used to. Get to a cafe if you want to and order a pot of ginger or peppermint tea, read a book. Our choices are not limited if our mind isn’t! And I pray for all those struggling and wish you well.

      • bev April 26, 2014 at 7:05 am #

        Thank you Wunderer…I in turn wish the same for you.

        Yes…when you stop eating sugar and even too much salt for a period of time…trying it again, well, you wonder why you ever liked it in the first place! It’s just a nasty habit that once it’s broken, is very easy to live without.

        Cheers:)

  5. k April 24, 2014 at 6:05 pm #

    Becka, If you go for “the bag” I hope it is as successful as mine has been. My option that day 39 years ago was death or “the bag.” So an easy choice to make, and life has rolled along since then with really very few problems.

    I can hardly imagine living with uc for 10 or 20 or more years .That represents a physical and emotional courage that I would not have had.

    I wish you all the best as your life moves forward.

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