Ulcerative Colitis Tips


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Don’t Give Up

Leslie C – “Currently I am in a state of remission from ulcerative colitis.”

Some more details about Leslie: I love to read, mostly self-help and spiritually inspired works these days by authors like Wayne Dyer, Depak Chopra and Louise Hay. I love to garden and work with growing things that respond to sunlight, water and love. I have a herb garden with lots of Rosemary (my favorite herb).Working with plants gives me a good feeling.

leslie-c-f

I have one son who is loving and supportive and a granddaughter who thinks I’m awesome. I feel gratitude every day for the gifts I’ve been given in the way of good friends and family who accept and understand my condition.

Leslie’s Story:

I was diagnosed with UC in 2009 and my first trip to the hospital with what I thought was the flu turned into a 9 day stay where they advised me that I would have to have a colostomy. They advised that I had ulcerative colitis which I had never heard of. I asked what caused it and they said they didn’t know. They also told me there was no cure. A nurse came and drew a circle in black magic marker on my tummy where the incision would be and sent my husband home with a DVD giving him the information that he would need to understand and deal with my colostomy. I was on morphine for the pain and steroids to stop the symptoms and I lost 30 pounds in 10 days. They began to feed me intravenously because I couldn’t eat. I truly felt like I was going to die.I began to examine my life and to look at all of the things I felt I had done wrong. I was terrified and cried a lot while facing the blackness and emptiness that lay ahead. I was wretched and had almost given up hope th at I could get better. Then a friend came to visit and gave me a book that when I began to read it, changed my life. It was called Journey to the Heart by Melanie Beattie.

I strongly recommend the book as a starting point to the healing process. I found it to be uplifting and it shed a ray of hope when I needed it most.

Medications and Treatments:

I am on a monthly infusion of Entyvio and I can’t say enough good things about it. I have basically gone into remission and am feeling great and showing no symptoms. There is no blood in my stool these days and I usually need the bathroom only once, in the morning when I get up.

Entyvio is new and targets specific areas in the gut and it works wonders for me. You start out with a half hour infusion every 8 weeks and then every 7 and then once a month. It’s an expensive drug and I have been fortunate in that my husband’s insurance covers my treatments.

Entyvio Info

So keep a postive attitude is my advice.

Accept what is and believe that you can heal. Pray, meditate and be kind of others and to yourself. Connect to the source and get positive healing energy. Read that book and then all the others that you can get your hands on that deal with healing yourself. Eat healthy foods that your body can tolerate and avoid the foods that trigger your symptoms. My wish is for you to be well.

written by Leslie C

submitted in the colitis venting area




Entyvio

16 Responses to Don’t Give Up

  1. Adam
    Adam December 4, 2016 at 1:48 pm #

    Hi Leslie,

    THank you for sharing your story with us, and I hope you continue to do well with your treatment and positive thinking!!!

    Adam!

    • John D. December 4, 2016 at 9:16 pm #

      I live in Belleville, Ontario, driveable to Kinecardine.. but anyways. I’m John, and i’ve been diagnosed too. @43, my bday today. I found out I had UC in Oct. And was hospitalized 3-4 weeks. I had so much blood come out. They did the scope, and saw it on my pic after. Im on prednizone 9 tabs, taper to 1 (50mg) and also tylenol & dilauded, for pain, larazapam to help sleep at night. I’m a truck driver by trade and off on medical leave. I’ve been surrounded by family and doing what I can. Going back to Dr. to see if I can get on another drug to speed healing up. I”m a up and always a go go kind of person, but dealing with this, I’ve had my depression bouts. I used to weigh 244, now 180. I’m scared and frightened, but I”m positive and see the light @ the tunnel. I’m not giving up, everyone!
      Adam, I love your website, and possibly you could copy and share my story too. Thank you.

      • Adam
        Adam December 7, 2016 at 11:19 pm #

        Hi John,

        Thanks for your comment, and hoping you had some good times on your birthday even though you are recently diagnosed with UC and those are often some of the tuffest times during the early days. But for sure, KEEP UP the positive thinking!! For sure there is depression that comes along with UC, but in reading your message the positive vibes come through too, and that’s really great to see and important. Wishing you the best with your doctors, and if you’d like to share your story, you and anybody else can follow this link and do just that: http://www.ihaveuc.com/write-about-your-ulcerative-colitis/

        Best to you,

        Adam

  2. Laura F. December 4, 2016 at 2:13 pm #

    Hello, Leslie.
    So happy to hear that you found something that works for you!

  3. Sharon December 4, 2016 at 2:54 pm #

    Hi Leslie,
    So happy that your are doing well on the drug. I also started Entyvio as a last resort before surgery and am also doing fantastic. I have gained back all the weight lost beforehand and have had no negative side effects whatsoever. For me, it has been a miracle drug. Like you, I never gave up on a positive outcome! Am eager to read the book that you suggested.

  4. Ellie December 4, 2016 at 3:14 pm #

    Great to hear you are in remission after what sounds like a similar bout that I had 5 years ago. Glad to hear entyvio was what has put you into remission. I am contemptating taking entyvio that my doc wants me to take, as I have moderate to severe UC in my descending colon. I feel great and am in remission otherwise, so don’t want to take it because of all the side effects I have heard about through the entyvio Facebook discussion group. I took remicaide and had 100% antibodies to it and lots of side effects so I am reluctant to try entyvio because I feel so well through lifestyle changes and following the SCD diet. Reason to take it is so as not to eventually get colon cancer. Just wondered, what kind of side effects did you have?

    • Andrea M
      Andrea December 4, 2016 at 7:15 pm #

      Ellie,

      I tried Humira and Remicade to no effect. I have now been on Entyvio since May 2016 and it has gotten my symptoms out of the rafters. I’m not completely in remission yet. I’m at about about 3-4 times a day down from 20+ and still have some urgency (although that seems to be decreasing since I’ve added a hydrocortisone foam rectal therapy). I’ve only ever experienced some tiredness the day of the infusion. I do have some joint pain, but have had that ever since a year ago when I was on a ton of daily Prednisone. In addition to the Entyvio, I am also on Methotrexate (that has causes some hair loss for me) which doctors may recommend adding to combat antibodies. I did not have any antibodies that they could find, but they put me on everything at once to keep me out of the hospital and we haven’t revisited trying to eliminate the Methotrexate yet.

      That has been my experience with Entyvio. I hope that helps.

      • Ellie December 5, 2016 at 6:14 am #

        Thanks for the info. Yes, my doc wants me to be on methotrexate pills low dose with the entyvio but It’s hard for me to think about putting all those chemicals in my body as I only have 1 or 2 BMs a day, no blood and feel really good. I have a lot of energy and am more active than most people my age. (72) I have had UC 38 years with only 2 hospitalizations but having a small section of my colon moderate to severe is what the doc wants to try to clear up. I saw the doc up at MASS. GEN who did the initial clinical testing for Entyvio and he said I wouldn’t feel much differently, even if I took entyvio, but it might (50% chance) clear up the section that is bad. Guess it’s worth the chance and can discontinue it if I have too many side effects. Lots of people apparently have thinning hair as well as weight gain as side effects as well as headaches, fatigue and generally feel badly.

  5. Maria December 4, 2016 at 4:07 pm #

    Hi Leslie.yes I would like to know also on side effects..I’m on remicade a d it seems to help but I am getting a flare here and there. Tx
    Maria

  6. Patricia December 4, 2016 at 5:18 pm #

    Iam so happy to hear that Entivio went well for you.
    My son was in Remicaide, then Entivio and last one Humira, non of those medication put him into remission I don’t know why. He is only 16 and is having his colon and rectum remove after January 1st 2017, and the doctor will do the j_pouch after de 2nd or 3rd stage of operation. So Iam very happy for you Leslie.

  7. Andrea M
    Andrea December 4, 2016 at 7:17 pm #

    Love hearing about positive results for fellow UCers. Congratulations!

  8. Amanda December 5, 2016 at 9:28 pm #

    That is wonderful news! I too reached remission earlier this year after a 2.5 year long flare the last six months of it i thought i may die. I started imuran and about 6 to 8 weeks later no blood no diarrhea….i forgot what solid stools were like….i feel free to have a great life again.

  9. Paul S
    Paul December 7, 2016 at 2:17 pm #

    Leslie,

    Thanks for sharing your story and happy to hear that Entyvio is working for you and others. I have had UC for 17 years and have been hospitalized for a total of 59 days mostly due to 3 major flares. I’ve also had C-Diff 3 times. I’ve been able to avoid surgery and Biologics until my most recent flare this summer. My GI recommended Entyvio, but the insurance company forced us to try Humira first. I assume their direction was all based on money since I can give myself the shot instead of having to go for infusion. I was not happy about this as I would prefer to be on the drug that targets the problem, not one that affects my entire body. I’ve been on the Humira for 3 months and so far it has worked pretty well, I still have occasional blood, but my symptoms are quite livable. Hoping that I progress to full remission over time, but also thinking that I may eventually wind up on Entyvio.

    Thanks also for the book recommendation, I am going to try it.

    I, and my GI, also agree wholeheartedly that a positive attitude is needed and gives you an advantage. I hope things continue to go well for you

  10. Artem December 8, 2016 at 4:16 am #

    Hi! I was diagnosed with ulcerative colitis in 2013. I went through therapy Remicade, and now I’m good. Thank you for your story. By the way, at the beginning of 2016 I created a website about ulcerative colitis and Crohn’s disease. Site in Russian language, because I from Russia:)

  11. Debora H December 13, 2016 at 8:17 am #

    Greetings, I’m moved by the sharing of your experiences… I’m 64 & have had this since my mid 40’s. My symptoms are always mild however seeing blood in my poo and on tp is never mild. I have 1 or 2 soft bm’s daily. I’m trying to adhere to a better diet while taking 2 lialda daily & mesal. supension anemas twice weekly. 4 lialda is my Drs order but I was trying to cut back, not from any obvious reactions. I just know it’s chemical. Ha! What was I thinking. I’m increasing today. I spend time daily, outside of chores & fitness, thinking of all I am grateful for. And smile when ever possible. Merry Christmas, love to all…Debora

  12. Kathy G December 17, 2016 at 2:22 pm #

    Hello all, I have a question about Remicade? I have had my three loading doses and due for fourth the end of January. I am also on 20 mg Prednisone as I have tried to wean off, got down to 5 and flared. I will start weaning again soon. I am suffering from hair loss, headaches, and experiencing nausea? My question is with the nausea, did anyone else experience this when starting Remicade and will it pass if so? I should mention I am also taking an iron supplement and a probiotic.

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