How a Bad Ulcerative Colitis Flare Started and Stopped (Part 2)

Thank you again for watching the video, and a very big thank you to Dr. Neil Stollman, https://www.eastbaygi.com/our-team/neil-h-stollman-m-d-facp-facg-agaf/

Also, some other interesting details some of you might be interested in:

When I walked into the hospital in Spain (Valencia’s La FE hospital) I presented to them my European insurance card, which I received in the Czech Republic. This costs me about $90/month, the rates just went up about 5% in 2020 from the previous year. Anyways, all expenses appear to be covered as there are some pretty helpful cross-country coverages available in the EU (European Union). Also, for the actual prescriptions, I paid about $2.00 for the initial Pentasa/mesalamine prescription, even less for the Flagyl antibiotic prescription(which I never used) and just under $5 for the budesonide prescription, so very very cheap indeed. I have no way of knowing what the hospital expenses would have been had I not had any insurance, but the budesonide would have cost $185 which is clearly a big difference.

Also, as you may remember, I held a skype interview with a GI doctor in Barelona a few months back, Dr. Cardenas. The link to that video is here: https://youtu.be/K7vg4nPDb6g

And, I actually emailed Dr. Cardenas in addition to contacting my friend who grew up here in Valencia. And, both Dr. Cardenas and my friend both recommended the exact same hospital to go to which I found pretty cool. Anyways…just a few bits of info.

Thx again for watching,

Adam






14 thoughts on “How a Bad Ulcerative Colitis Flare Started and Stopped (Part 2)”

  1. Hi Adam,

    First, I am so happy your are on the mend! Your blog was a lifesaver to me 6 years ago when I first got UC. After learning about the SCD diet and taking Llialda and occasional doses of steroids I went into remission and have been UC free for over 5 YEARS. Unfortunately this past October it came back. I tried SCD but was not successful as I had been in the past in sticking to it. It is now February 2020 and I have been bleeding etc for over 5 months. Is this very dangerous? All my doctor wants to do is Humira. I am so scared right now that I have pledged to SCD; also on hydrocortisone enemas which I have done well on.
    Because it was so long ago, I cannot remember if almonds and almond butter are allowed when you are first starting SCD? What else should be eliminated at the beginning?
    Thanks so much for all your and your readers support..
    and again, I hope that you continue to feel better.

    ps. My doc has never mentioned Budesonide.

  2. Hi Adam
    Thank you for the information. Your story always inspired me to stay positive. I was diagnosed more than 10 years. When I found your website and read your story and other peoples’s story I felt stronger to fight the disease. It always feel good to know that we are not alone, keep up the good work. You are on the right track.

    I wish you a speedy recovery and all the best.

    Afshan

  3. So pleased that the Budesonide worked for you Adam. It didn’t do a thing for my UC unfortunately but I’d certainly try it again as I really don’t like taking Prednisolone for obvious reasons! Look forward to seeing your next update and hope your recovery continues.

  4. I am glad that you’re feeling better. Great news. My GI doctor prescribed Budesonide, My insurance would not cover it. So I start taking Prednisone. It did help , not happy with the side affects. At 72 it’s really taking the tolls on me. By the middle of March I will be done, then the waiting begins. Will I have a few months of relief, Or something else to try again.
    Keep up the good work Adam, wish you the best. Thanks for all the good information.

  5. So sorry to hear that your UC reared it’s ugly head again Adam. The same thing happened to me. I was diagnosed with UC in October of 2011. At the time, I was on meds for a short period of time, and then weaned myself off of them. I was in remission for the most part, but starting getting symptoms as of May, 2019. I had a colonoscopy in September and they found that I was in a flare. I was experiencing blood and mucus. So, I was put on Mesalamine suppositories and oral Mesalamine. I used the suppositories for a short time and the nurse practitioner had me take the oral Mesalamine in place of the suppositories. As of this date, I am still experiencing blood and mucus. So, the NP prescribed Prednisolone Medrol pack 4 mg. I will be starting that today and hoping it will take care of the blood and mucus.

  6. Thanks Adam. Grateful for all that you do. Hoping you’re feeling better every day. A friend borrowed me the book, Medical Medium by Anthony William. This is where I heard about juicing celery. I think this was the missing link for me with my UC. I have been drinking 16 oz. of organic celery juice every morning on an empty stomach for 4 months now. I also drink 16 oz. of organic carrot juice with fresh ginger in the afternoon. i know this is not for everyone, but right now it’s working for me, no medication at all. Feel better!

  7. Hi Adam,
    I am very happy that you are better. You have helped so many of us by your generous blog and kindness and positive energy. I tried budesonide, but not the oral one, it was a rectal foam. I will definitely mention the oral budesonide to my doctor. Keep well and keep us posted. Big hug.

  8. Hi Adam,
    I appreciate you opening up about how the disease effects your you.
    What a wonderful website you have put together.

    I am sorry you had such a flare. I hope you are doing a lot better now.

    How did you weight loss work out?
    I realize everyone has a story to share and everyone’s symptoms can be different.
    When I flare up I lose weight rapidly and go to the bathroom a lot.

    What is terrible I don’t keep a journal where I documented my last flare up. I can tell you though I am 155 to 158 pounds and I am in my 40’s. I was diagnosed with UC 3 to 4 years ago. My last major flare happened two years ago when I was picked for jury duty. I said to myself it was my civic duty to go through with jury duty even though I had the onset of flare. It was bad enough that during deliberations I had to stand to get the courts attention so I could go to the bathroom. Plus they keep you long enough that you almost everyone at some point has to go back to the break to the break room to relieve themselves. I was very stubborn and anything I ate would go right through but not before we had to listen the case. I was on the case for about 7 to 9 days and it was brutal. The worst was having to hog the restroom and cleaning up enough not to embarrass myself.
    I would get home each day and my wife would be like you need to get to the doctor to get a stool sample and get on a steroid. Eventually I listened to her but it wasn’t until I almost had a major accident in the court room until I listened to her.

    My most recent flare was last year but I cannot remember exactly when it occurred. Each time I flare I am tested for cdiff and other infections. This time I was negative for Cdiff. I was given mesalamine suppositories and budesonide in pill form. I can tell you the steriod works in less than a week by slowing down my system. I want to say I was on it for 45 days and then you start cutting the dosage by taking half pills for several days. They also had me start taking lactaid pills and I had never been lactose intolerant. I complied but lactaid pills did not do anything for me.

    After this flare I decided to change my diet by cutting out fried foods, processed meats (which I love sandwhiches, and then substitute most meals for a salad. Well it didn’t take long for my wife to tease me which I understand why she was teasing me. I left out the part of why I decided to change my diet. I watched a Netflix documentary and learned that the strongest man in the world is on a plant based diet and how much an animal has to eat to get the protein that we then get from the animal. So now she is calling me vegan but that is not it at all. I just have a salad instead of a sandwhich.

    I miss coffee, beer and few other things…Alcohol really slows down my digestive system.
    I drink a lot of tea and this one tea seems to work well for me (Tazo – Matcha Mate Grapefruit)
    or Sleepy Time Tea

    Currently I take the following medicines:

    50MG AZATHIOPRENE – 2 tablets in the morning
    1.2G each tablet Mesalamine Delayed Release Tablets (4 tablets in morning)
    Ferrex 150 (IRON) – 1 pill at night 150mg

    Melatonin at night and I think this helps slow down my digestive system

    I am a firm believer that my diet has to change if I am going to have any success with this disease. I think a blander diet can help me as well. I still will have a breakfast sandwhich but now I will have it with Egg and Cheese and no sausage. Little changes like this may help me have less inflammation in my intestines.

    Thanks,
    Josh

  9. My heart goes to you Adam. Reading your opening sentence on the first video I identified with each and every word. People say “this is not fair” “this should never happen to a great guy like you”. “You do not deserve this”. This is all true but my feeling is, none of this is science. I struggle too, every day with the “wipe” – I work thru my anxiety too everytime. Ups and downs and as you say, feelings of great joy and feelings of great despair. If I go very far from Elaine’s SCD I pay – a little or a lot…never cramping and running anymore but still enough to keep me nervous every day. initially I had only blood, bright red blood, for over a month (nothing else) month and half in hospital barely alive, eventually 87 lbs. from 145 lbs. You, kind soul, have my book on your site – Cathy’s Free Ebook.
    Although I have not had what you are having now, I hardly ever vere off the SCD. Five years and still going strong – but with scares along the way. If I have a piece of pizza or any sugar whatsoever I get a warning. People from the site have asked why not go back and eat what you like…truth is, I’m really scared to go even a little sideways as generally it just catches up with me (accumulation). Two or three days of various meals of light battered fish n’chips ( 5-7 chips only),maybe a little goat cheese, a breaded veal – there’s the blood again! So I have adopted this saying “if this then that” – it is science to me now. The cards we have been dealt are, to not be able to eat like normal folks. I fear the fear – the fear of those hospital days. I don’t go to doctors anymore. I just eat simply and do an implant if scary enough and proceed with really great feel good days or not – but as you say, always learning something new. Not easy but the highs are high when we feel so well. Bet lots of folks with U.C. can eat pretty much what they want but not me – so it is what it is…. and I feel very fortunate with what I do have (medical marijuana keeps my spirits up). My husband says I’m like the canary in the coal mine. When I eat something that is not particularly healthy I see red the next morning. He says the rest of us don’t get the alarm/warning sign so we continue to eat poorly at times. He says I’m so healthy – loving our long walks and hikes – I hardly sit down, he takes the odd break for his back. He says I’m healthy because I eat so well. He says I’ll likely live a very long healthy life. If that is the case maybe this is the way the universe makes sure we stick around for a very long time – and a good time.
    All the love Adam. I will be watching and listening always thank you. Just rewatched your interview with Dr. Mark Davis ( hope that is his name)….fabulous!! Fecal guy.

  10. Adam,

    I have been reading your ebook, very good and inspiring.
    Like you, I have the same type of UC. Right now, i am on Lialda 3X a day. Was diagnosed in 2017. What a wild ride, man.
    The medication does not seem to keep the monster at bay. My GI Doctor wants me
    to start on Remicade, but i worry about side effects, and I read about the
    Coronavirus that is slowly making its way to the homeland. Right now, I am reading the SCD diet and i would like to be very strict with this diet. However, I had a question. What is the safest foods to eat when you are experiencing symptoms? I don’t recall reading that in your ebook. But maybe i missed something.
    I hope you are doing well and keep fighting and living life. I get depressed now
    and than, but we can not allow our negative thoughts to get the best of us.

    1. Hi Jeremiah,

      Thank you for the message, and I’m hoping you can pull through the symptoms soon. Definitely your mental strength even in the hardest of times sitting on the toilet will be one of your greatest assets, don’t under estimate that.

      As for safest foods, I would stick with a homemade chicken soup, basically some vegetable broth, remove the vegetables and keep the broth and then add chicken and removing as much fat as you can. It tastes boring for sure after several meals in a row, but that helped me a lot in my most recent flare.

      On a side note, I’m pretty sure the Pentax’s I was recently prescribed did nothing for me. I stopped after just a few days. And I’m nearly thorough with tapering from the budesonide… which is a steroid and down your one sachet every threee days for over a week now. Probably off that in another week I’m guessing. I’m at one poop per day and quite amazing from a month ago.

      Good luck J

      1. Hey Adam,

        I am trying the chicken soup with veggies (onion, celery, carrots, parsley) that i chopped up with a food processor, i got the recipe from the Specific Carb Diet written by Elaine Gottschall. Also, i have been cooking nut breads with almond flour and chopped up cashews. I noticed that my symptoms got better at first couple days, than I ended up with looser stools and cramps, and saw some small blood stripe on a stool. Is it normal to go back a couple steps than forward? Or am i Going down a path that is not good? Before this, I was eating whole cooked cauliflower, broccolli, carrots and Salmon, that seemed to be fine with me.
        With dietary changes, do you notice that there are times where your symptoms get worse than better?
        Thanks,
        Jeremiah

        1. You are doing great! Elaine says you will have setbacks as these bacteria can be “changlings” and give you trouble before they all die off…you have taken their lifeforce – they become desperate and can make us sick before we get better. So some ups and downs but you are on the road to recovery believe me. You may find too much of something ‘legal’ may still be too much just now.

  11. Hey Adam,

    How are you feeling these days? Hope you are doing well. Sometimes I do wonder why me?
    Do any of you UCers get into that frame of thinking? I find myself, asking this question
    a lot to myself. It is important to keep a positive attitude and maybe some humor to alleviate
    the negative emotions.

    Thanks,

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