iHaveUC.com's FREE email list, Join over 15,000 other subscribers

21 Year Old Dean’s Struggle to Overcome Ulcerative Colitis

Dean M fMeet Dean:

Hi guys, my name is Dean and I am 21. I’ve had UC now since February so still all new to me. I’ve been through a lot so far but hoping to find recovery at some stage.

Some more background:

I enjoy sports, like soccer. Love swimming I’m from a small country called Ireland :) I am an easy going lad who loves to hang out with friends.

Symptoms of UC:

Some cramps. Bleeding just started today again for the first time in about 2 months

Dean’s Story:

Hello guys, basically I’m after having my 3rd dose of infliximab about 2 weeks ago now. I felt great afterwards and improved a lot. I was down to about 4 bowel movements a day. For the last 3 days the frequency has increased to about 7 :(

I had an appointment with my GI today, and he thinks the infliximab is not working well enough. He wants me to have another scope done in a few weeks. He also wants to try something called Humira, as the infliximab isn’t having a great affect on me. Has anyone any feedback about this drug and is it affective? All I know is that I take it at home every two weeks. The GI also mentioned that I might have to start thing about having my entire colon removed if humira does not work. So yea didn’t get any good news today really.

I’ve also been watching my diet a lot but I’m finding it hard to figure out which foods don’t agree with me. Will the effect me that day or the day after??

I really don’t know what to do anymore.

My family and girlfriend have been really supportive these last few months. I spent 3 weeks in hospital and they nearly took my colon away it was so bad. After 3 weeks of IV steroids I was sent home, and I have spent the last 8 weeks on oral steroids. I just got back to work and things were looking good for once.

I know what everyone else on this is going through so any advice or help would be so greatly appreciated. I was also thing about starting a new probiotic that has come out for people living with IBD. It’s called Optibac. Any help at all guys would be great. Thanks again Dean :)

Medications:

I’m currently taking prednisone rectal foam which I find really helps with the pain in that area. I also take asacolon and 6-mp. I take amitriptlyne at night to keep the bowel relaxed.

written b Dean Murphy

submitted in the colitis venting area




13 Responses to 21 Year Old Dean’s Struggle to Overcome Ulcerative Colitis

  1. Adam
    Adam May 28, 2015 at 5:39 am #

    Hey Dean,

    thx for sharing your story!

    Here’s a few page links from the site regarding Humira, as well as a page with Remicade reviews (infliximaber)

    http://ihaveuc.com/humira-reviews

    http://www.ihaveuc.com/remicade-reviews/

    And, I’ve been a really big proponent of treating or at least trying to treat UC with diet changes. I follow basic ideas of the specific carbohydrate diet with some minor modifications and it has worked real well for nearly six years now.

    Here is some information on that general thinking in a video I created about getting out of a flare with diet alone:

    http://www.ihaveuc.com/the-colitis-flare-beat-down-party-getting-out-of-my-flare/

    Also, here is another page with diet info:

    http://www.ihaveuc.com/the-diet

    And lastly, here is a link to the two ebooks I wrote with more details about how I’ve dealt with this disease after my diagnosis in 2008 and a recipe book (these ebooks are not free and they are available only in digital format for direct download): http://www.ihaveuc.com/feeling-crappy-to-feeling-happy/

    Wishing you the very best in moving forward, and cheers to your family for being so supportive of you. Definitely let them know how much you appreciate their concerns, that’s one of the best things anyone can have when UC symptoms strike.

    take care,

    Adam

  2. Erica May 28, 2015 at 6:09 am #

    Hey Dean! Sorry to hear you’re having such a rough flare up :( I take Humira and have been since March, So far it’s worked out very well for me! I’ve heard mostly good things about Humira.

    Yeah, it can be tricky learning your trigger foods. I’m still learning them myself and I’ve been diagnosed 9 months. In general, if you’re having a really rough time right now I would recommend a low residue diet (pretty much low fiber). Dairy can also be hard to digest if you’re having a rough time. I would say salmon, baked potatoes (without the skin), chicken and bananas are the easiest and safest things to eat. along with other low fiber things.

    If you have any questions or want to chat, feel free to look me up via facebook!
    https://www.facebook.com/erica.murillo.370
    :)

  3. No Gluten May 28, 2015 at 8:49 am #

    Hey Dean,
    My name is Brian. I am 28 years old and was diagnosed with UC July 2014. Here are some tips that worked for me. I was taking Lialda and am completely off of my meds and down to one bowl movement per day. It has taken me almost a year but I did it.

    I am 100% gluten-free (this helped more than anything) and stay away from dairy and soy as much as possible. I rarely eat fast food anymore and shop mostly at local farmer’s market. It is hard, I grew up on Taco Bell. But once you get used to it you don’t miss it anymore.

    I take Phytomulti (multivitamin) twice a day, turmeric, and klaire labs probiotic.
    I also eat lactose free yogurt every day mixed with chia seeds and 15 grams of l-glutamine. Some days I will do 2 of these, morning and evening = 30 grams of l-glutamine.
    I also eat lots of bananas!

    My GIs all said I would have to stay on Lialda/Colozal for the rest of my life, but I proved them wrong.

    I am still battling prostatitis which started September 2014.. My urologist said it’s not related, but I developed this during the period when my UC was at its worst. They say inflammation can’t move like that, but I don’t believe them. My urologist put me on doxy to clear it up but the antibiotics started undoing all the good bacteria I had built up. So I told him I am stopping the doxy and I am now taking Beta Sitosterol, quercetin, and saw palmetto/pygeum. I am already seeing some improvements.

    Our bodies can heal themselves. My urologist, just like my GI, both say supplements and diet won’t fix the problem. Well, I am living proof. Some days it makes me want to become a GI to help others, because if you listen to your GI you could sometimes never recover!

  4. No Gluten May 28, 2015 at 8:54 am #

    Also I forgot to mention, I am also drinking 100% alkaline water. I also had a food panel test done. Ask your doctor about this… It cost me $250 but worth every penny. I got a chart back after testing my blood with what foods I need to avoid. Gluten of course was in the “severe” reaction range levels. The food panel helped speed up the trial and error process.

  5. Alan Grant May 28, 2015 at 10:12 am #

    Hang in there Dean, I have had uc for 15 years and it does get better.You will have good and bad days ,But hopefully they get your medication sorted.I am on colazide 750 mgs and take 9 a day and it has controlled my colitis.Hope you feel better soon..

  6. C. Miller May 28, 2015 at 3:59 pm #

    The colonoscopies I feel anyway, just make things worse. You know your colon is sick so why do “they” always want to go in to see….what, how sick it is, and now O’ you better have your colon out as it looks really bad. I was told this and now, finally I am well.

    Think of what is happening as a bacterial infection that feeds from sugar. So cut out everything that is sugar in any form, sweetners, honey, anything that ends in ose like ducrose, fruitcose, and the one that is corn syrup..really a killer. No carbs or starch as it turns to sugar and the critters feed off it. You have to starve them to death. It takes time but it worked for me. Now 3 years later and no more drugs. YaY! i

  7. Anneabell
    anne May 28, 2015 at 4:05 pm #

    Hi Dean, did you GI do any blood tests on you to see if infliximab is the correct dose for you ? I only ask as I have had my 3 loading doses as well but my third dose I am going back up to 10 times a day with bleeding :( my GI believes the infliximab is not working correctly for me and I have to have blood test for infliximab antibodies to see if the dose is the right dose. if it is not I may have to increase my dose or change the frequency that I am to get it ie instead of every 8 weeks every 6 weeks.

    Humira not much about it apart from it is very similar to infliximab the difference is infliximab uses mouse and human antibodies were humira uses only human antibodies. I do now some people that used to be on inflixmab change to humira and found that this worked better and visa versa

    diet is one of the hardest things to work on you think you have it down packed and then bam you flaring or again, what you ate last week you founding it is affecting you this week. I found the best way to determine what you can eat and can’t eat is to start a food diary ie every meal write down what you ate and if any symptoms occurred after that meal or if all went well you may have to do this for a few weeks. you can do a spread sheet and write down food you ate; symptoms; time you ate; etc., I have one that was given to me by a natural path if you like I can send it to you let me know

    also as Adam mentioned a lot of people follow SCD; paelo or GAPS and found that it helps them of fodmap diet. you may want to see a dietiction they can help out with food choices and help work out diet etc.

    Good luck
    Anne

    • Dean Murphy
      Dean May 30, 2015 at 1:05 pm #

      Hi Anne, yes he did take some bloods the other day but not sure what for? I have downloaded a great app on my iPhone called GI monitor and I would highly recommend it to anyone. It lets you log every detail about your UC and also lets you chat with others who are suffering with the disease. At the moment I feel like this is one big waiting game. I just take every day as it comes. I felt like I had been flaring all week and had to up the dose on the pred but in ok now :) I think maybe it was all excitement with the new promotion in work :) at least one thing is going my way haha. Thanks a lot again for the comments you’ve all been a great help!

  8. Brenda W
    Brenda M May 28, 2015 at 4:33 pm #

    hi Ann, I had the exact same reaction to the Remicade. went every two months for an hour drive out of town and now finding out that it is probably not working for me. because I had to go on antibiotics for sinus infection 4 times in a row I was not able to get my infusion. there was absolutely no change in my symptoms good or bad. the only thing that is ever brought me short term relief unfortunately is the prednisone and I refuse to go back on it until I lose the last 10 pounds it made me gain the last time. I am curious I have never heard anyone mention lomotil it works wonders for me. it enables me to stay at work every day and sometimes go shopping on the weekends. symptoms are not too bad I am going to see a specialist tomorrow in another city because I think my GI doesn’t know enough about the disease and is giving up. so maybe there will be something new for me to try hopefully. stay positive and keep trying. love and peace to all suffering with this disease

  9. Brenda W
    Brenda M May 29, 2015 at 11:53 am #

    hello everyone, as I said yesterday I had an appointment today with a new doctor one and a half hours away from my home. I have very exciting news. it is in the works for me to be only the 16th person in Canada to be signed up to start infusions with the new drug called vedolizumab. I am very excited as Remicade did not work for me. this drug is only a one and a half hour infusion rather than a 2-hour infusion like Remicade. it was just approved for use in Canada 2 weeks ago. I am very excited to try this new medication as nothing else has worked for me and I have tried many over the past 4 years. even though I have to drive far to get it it will be worth it if it works for me. I will keep you posted love and peace to all suffering with this disease

  10. Dee June 4, 2015 at 6:06 pm #

    Hi Dean I wish you all the luck in the world I never knew anything about UC until 2/6/15 when my 21 yr old son was diagnosed. He tried aprisio and lilalda they didn’t work wanted to try remicade but my insurance would not cover it they said Humira was their their drug of choice. He was constantly in the bathroom either pooping or vomiting. We had 3 hospital visits and on the third one his colon ruptured. They removed almost all of his colon and now has a colostomy. We are now waiting to see about the reversal. I never knew how bad this disease is. I hope you find something works for you soon. I bought the book the specific carbohydrate diet they say it works but I didn’t even get a chance to read it.

  11. Mary June 4, 2015 at 7:20 pm #

    Hi Dean!! I have been living with u.c. since my 20’s and I’ll be turning 45 the week I go in for my last J-pouch surgery which is the reversal. In 2013, I was hoping that Humira was going to be my answer and that I would avoid having to have surgery but unfortunately after less than three months of injections I was in a full flare and started to have what initially looked like chicken pox over my entire body. I discontinued the Humira but as it turned out it had triggered another auto immune disease, psoriasis. My entire body was raw for a year and a half and I was still trying to battle the u.c. At that point, going into the hospital wasn’t a good option. I started a new quest looking for answers and treatment for the psoriasis which became so severe and uncomfortable that I could rarely sleep although I was exhausted all the time. I woke up every day to fight a battle that I seemed to be losing. I became very discouraged and depressed as nothing I tried seemed to be working. I was having 25-30 bloody bms a day. Finally the psoriasis cleared up by Nov/dec. of 2014. By February 2015 I was so sick that elected to finally have surgery as I didn’t feel that there was no harm in trying Remicade or Methrotrexate. I’m now two weeks post my second surgery of the 3 stage j-pouch surgery. It has been a very rough time but I look forward to life free of u.c. and the medication merry go round I was on.
    Best of luck to you! I should add that I’m of Irish decent and do have a family history of psoriasis, although I had never suffered from it before taking Humira. Keep this in mind, especially if there is a history in your family.

  12. Luz Resto November 9, 2015 at 6:34 am #

    Hi Dean. I’m an iterative health coach and have had UC for 6 years now. As a person with UC I will tell you that as tough as it can get sometimes, things get better. Don’t let the doctors scare you into surgery. I have been medication few for the majority of the time and have been able to manage things through diet. As a health coach I would advice that you get tested for food intolerances, research the side effects of the medications you are taking, the side effects of surgery, and ways to practice relaxation. I have been on a gluten free, dairy-free diet for 5 years and it works! My doctors used to tell me my diet had little to do with things and they were wrong. They said I would need medications for the rest of my life. They were wrong. Do your research. Feel free to email me redspot1971@gmail.com or leave me a message on Facebook at Menu To Health. It wonderful that you have support as it makes a huge difference. I wish you well and hope to hear from you.

Leave a Reply