The Ulcerative Colitis Roller Coaster Ride

Has anyone ever been on an old roller coaster that doesn’t do any flips or upside down stuff, but all kinds of ups and downs?  A ride where you are going up hills and then right back down many different times.  The mental game of handling ulcerative colitis seems to be similar.

the colitis roller coaster ride

I’m no expert in ulcerative colitis, that is for sure.  But after having it, and thinking about it, and feeling it for several years, it is such an up and downer its almost amazing.  I’m thinking it should be called “Ulcer Roller Coastitis” right?

Is it just me, or have you also had times where your symptoms of bleeding and cramping have nearly completely gone away 24 hours after you were having surgery thoughts dance in your head?

Have you also told your family your colitis is finally under control, and then walked out of the bathroom a day later after a massive whale killing bloody stool episode?sad about colitis

What a roller coaster ride this ulcerative colitis is right?

Have you ever made an appointment with your gastro doctor because you are mentally drained and you are starting to have no hope and surgery thoughts are creeping farther into your brainwaves?

Did anyone ever walk out of the gastro doctor’s appointment with a shinny prescription for a new medication to try?  And then race over to the pharmacy and yell at the people there to get this one filled ASAP because you are bleeding out of your tailpipe?

Has anyone also felt that within just a few hours of taking prednisone for the first time, you were finally cured?

Have you ever waited looking down into the toilet bowl, so excited to see what is going to come out because you are feeling better but want some doodie proof?

How many of us have said to someone, I think I’m getting better this time?  That’s where I’m at this morning, 12 hours until the SCD yogurt is ready.  I can’t wait once again.scd-yogurt-machine

24 thoughts on “The Ulcerative Colitis Roller Coaster Ride”

  1. A roller coaster indeed! Every time I think I’ve beaten the odds and entered THE remission, I get knocked down. When I think ‘this is it; I’m finally spiraling down the inevitable descent into colitis hell’, my symptoms vanish. Right now, I’m facing the joy of finding out my ridiculous fatigue has a very treatable cause (anemia) but then we have to wonder what bleeding is causing the anemia since I thought I was pretty symptom-free otherwise. Prepping up for another colonoscopy on Monday, ready for whatever it brings because whether we want to admit it or not, the roller-coaster is ours! Great post Adam. :)

    1. Hey Stepeh, thanks so much for the comment, this video stuff is crazy. It cuts off at the end, but my doc told me to take iron to fix the anemia symptoms, but again, gots to get to the underlying issue. no worries, you will get it done. good luck with the poke, we’ve all been there before

    2. Hi Stephen,
      I was found to have low iron also> I felt like an egg in a nest with no bird to sit on me. I was presented with 2 treatment options:
      (1) The fast way; and,
      (2) The slow way.
      I choose the fast way and was given an infusion of iron solution in to my arm. It took all day and i’t didn’t go too great as my arm swelled up afterward and apparently I got a blood clot. I am fine now but it was pretty freaky at the time. I just thought I’d post my experience for your consideration. If I get low again I’m gonna take the slow way and take iron tablets.
      Happy new year,

      1. Hey Peter, I think you are right on with trying the over the counter pills next time. They seemed to work wonders for me when I needed them a ways back.
        happy new years. I think where you are at you get it before everyone else here right?

      2. Peter, I’m surprised they didn’t suggest something like the infusion since they are on me to get my iron up. Sorry to hear your experience was so bad with the infusion. Doesn’t sound like fun anyway!
        BTW – what part of NZ? I lived in Invercargill for a year and a half, and that was actually my first ‘real’ flare (although I didn’t know it at the time…). Kia ora!

  2. I began the SCD one week ago. After having daily issues with bleeding, I have only had one TINY issue with bleeding since. I also have less diarrhea, less bloating, less gas….all-around feeling better.
    For iron, I suggest Gentle Iron by Solgar.

  3. Adam your post is so right and so brilliantly amusing. I have to see my consultant tomorrow and will be sure to use your expression ‘roller coaster’ as that sums up exactly what suffering from this condition is like. A roller coaster of symptoms, emotions and explanations, explanations to your nearest and dearest, most of whom don’t really appreciate what is going on with you. Such is life.

    1. Thanks so much Tony. I wish you the best with your office visit tomorrow. And thanks for all the support you have given others who have UC too. We need more people like you on this planet Earth!

      1. Hi Adam, that was a nice New Years Eve surprise to see your video, made me feel quite special.

        Saw my consultant this morning and used your expression ‘roller coaster’ which she understood straight away. Had a blood test, I’ve had so many now I’m starting to get ‘track marks’. She said she believes I have an iron deficiency which I had already suspected myself, hence the sudden fatigue. Gave me a surprise by saying when they did my colonoscopy there was a part of the colon they could not inspect as the passageway was too narrow, probably due to inflammation. She arranged for me to have an x-ray and then depending on what that shows maybe an operation to have a small part of my colon removed. Told me to continue on the Prednisolone although she mentioned she might try using a new drug on me which may also help stop the awful bloating of my stomach and help reduce the pain. 6 months now since first diagnosed, so the roller coaster seems to keep rolling without a break.

        All the best for the New Year to you Adam and all our fellow UC sufferers.

        1. Hi Tony,
          This will be interesting to see how the x rays turn out for you. I surely wouldn’t be surprised if I was in the same type of physical shape with regards to a narrow passageway right now too. Something inside of me is surely off course, and very up and down especially since writing the post above. If the doctors can fix you up and get you moving forward again, that would be a great way to start off 2011 right!
          Thanks again for all your comments, have a nice day,

  4. you are so great adam. i love this post with the pics. ha gave me a good laugh. so real. ha keep up making us laugh and know that there are others out there with this that are going thru the same thing. :)

    1. So happy you’re laughing Jennifer. Have a great new years!!!!!!!!!!!!!!!!!!!
      There’s a party going on right here… a celebration to last throughout the year heeeeear!

  5. LOL. Thanks for the video response! Gotta go pick up the iron script today (wonder if it is any different than OTC…). My new year resolution is to start vloggin’ again like I originally planned – you’re a real inspiration! No worries about the scope – I’m just glad not to go into this one sick. Cheers all!

  6. =) Adam, your post has exactly explaned what i feel.. Then, maybe we should try enjoy this crappy disease, right ;)and enjoy your yogurt =)

    1. Hey Love, Aint it crazy how some of these issues are really only known exactly by us UC folk!
      Pretty much takes one to know one on some of this stuff they don’t teach you in high school.
      Thanks for posting your comment! I really appreciate people getting their thoughts out.

  7. I love this post Adam. How obsessed we are with the poop. I’m doing well on Remicade, but when I was really bad I made my teenaged kids look before I flushed because they didn’t seem to think I was sick. Or that the stress they cause me makes me worse!
    I still have gas a lot, so my roller coaster involves whether I will make it through a yoga class without passing gas. Or even just walking down the halls at work it just slips out. Sometimes things get a little loose in the morning and I have to call in my freshman son late to school because of my UC.

    1. What’s up Judy!!

      So happy you enjoyed the posting. It is so crazy ain’t it how we are just so obsessed with the poop, just like you said. Maybe it’s a good thing that not everyone on the planet thinks like this…::))

      I totally hear you on the yoga class stuff….I have gone off yoga a few times now for reasons for sure you could understand… Now I just need to get back into yoga again as I’m feeling better and have no excuses not to be there.

      Take care Judy!!


  8. Adam, this post and all the replies that follow are totally hilarious and so RIGHT ON! Currently in a flare, so I definitely appreciated the humor. Thank you so much for your posts, your videos and this website! It has meant so much to me to find it this time ’round…

    All my best,


  9. Hi Adam,
    Sounds like I’m joining the converted but as I get ready to go into hospital for a few days, it’s nice to read about people who have exactly the same problems as I do! Wondering what the average hospital stay is when a flare is brutal (read 16 pounds lost in a month and fear down to my toenails when I have to leave the house!!!)
    And thank you, really.


  10. I’m feeling the rollercoaster ride right now but it’s my brother not me. I feel so bad for him, right now he got so bad we had to take him to the Cleveland Clinic because weren’t getting anywhere in NY. Drs in NY or at least the doctors he’s been to know squat about digestive diseases. His weight has gone up a bit since being there and he looks alot better but they are drugging him up major and we want him home he has three kids and a wife and taking him there wasn’t the best decision, found out hes in pretty good shape with the colitis but the effects of the disease were so bad that they had him on psych drugs for anxiety and depression plus he has really bad insomnia. He has been following SCD and that’s probably what has put the colitis in a remission but trying to get him off all the crap they’ve put him on is gonna be a long road.

  11. Just read the “roller coaster ride” and boy did that hit home! I’m at that point right now. Doc says that I’m currently in remission. Yeah, Right! I can tell you….his version of “in remission” and mine sure ain’t the same!

    I have never (knock on wood) been bad enough that I had to check myself into a hospital, but I sure feel for people who do.

    Now, if I can only get rid of the anxiety attacks when I have to leave the house! Grrrrrrr…………

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