Ulcerative Colitis Tips


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UC and Breast Cancer – Why Me?

Introduction:

Diagnosed with UC 11 years ago during a stressful time in my life. Put on Asacol, which I took for several years. 5 years ago diagnosed with breast cancer and stopped taking the Asacol. Chemo, radiation lasting a year with reconstruction the following year. Soon after all of that I again began to have symptoms again and in the past 3 years have had 3 colonoscopys and tried Lialda, Apriso and now back to Asacol with a recent round of prednisone. Currently working with a GI doc to start on Humira.

Some more about me:

I love to travel and try not to let my medical problems get in the way. I feel as if I have overcome breast CA and intend to kick UC butt to. Just trying to figure out the best way to go about doing just that. Through this journey I have learned so much about people and am thankful for all that I have available to me. Last year I went on two mission trips. Haiti and Guatemala. I was so scared that I would have problems while traveling…but did not even in the slightest and oddly enough my poo has never been so formed…WOW, what a blessing since flushing is a problem in both of those countries.

I have 3 fantastic kids and 2 beautiful gran daughters with a grandson due in April. Also in April I will celebrate my 50 birthday. As you can see I have much to be thankful for.

Colitis Symptoms:

I’m currently having problems with loose stools and mucous, have not noticed much blood. Also joint pain…big time, fatigue, gas, stomach pain and bloating

Colitis and Breast Cancer

First of all breast cancer probably changed my life first and just when I was feeling comfortable BAM…UC is the next challenge. Chronic UC combined with a history of cancer has my docs concerned, as well as myself. So now surgery is being suggested or to try Humira? What to do, what to do? I’m currently on 3200 mg of Asacol, while im not seeing blood still having mucous and several bm a day. No acute flares so I wonder if I’m being premature in considering surgery or just putting off the inevitable by trying Humira. Has anyone else had these problems together or can offer any suggestions to try.

I think stress does play a very big part in this disease. When I was first diagnosed I was very stressed from living with an alcoholic husband and going thru a divorce. Fortunately I work in an office with a bathroom close by and my fellow employees understand when I come up missing. I always carry a spare pair of undies..not matter where I go…Ugh…it does get old. I thought once my kids were old enough I would be able to shed the big purse and just carry a billfold..no such luck. HaHa.

While I do have a great support system it sure was alot easier to express my concerns with breast cancer than it will ever be to talk about UC. Most of my family don’t even know I have it. Just thinking that the colonoscopies are follow ups to the cancer. It is so embarrassing to have accidents and why is it that the you always have to go when you are in the back of the store and not in the front of the store close to the rest room?? Ugh.
I do have a great colo-rectal specialist who takes the time to listen to me and my concerns and I am eternally grateful for her.

I am mostly concerned about ulcerative colitis turning into colon cancer, especially with my history.

written by “Surviving”

submitted in the colitis venting area




9 Responses to UC and Breast Cancer – Why Me?

  1. KimberlyHI
    Kimberly February 23, 2013 at 12:20 am #

    Dear Surviving,

    I have to admit I normally get through the down days of having UC by thinking to myself “at least I don’t have something like cancer”. I’ve never even considered a person having both, but can I say that you are completely inspirational. Having these medical conditions, fighting through them, going on missions, still having a positive attitude, wow! You are awesome! I’m sorry you’re having a flare right now :(. Just wanted to say I was on asacol for many years as well and recently had to switch to remicade. Remicade is simular to Humira in that they are both biological drugs that shut down the immune system, from what I understand. So I did start Remicade because I was very sick and asacol was not helping my flare. The remicade did help within about a week and about 2 months later I was about in remission. It has been about 5 months and I am still in remission now. It seems to work well. I have heard it can stop working after awhile, and have heard of others who have been on it for years.
    Do your doctors worry about the fact the drug causes a weakened immune system though, being that you had breast cancer before? I don’t know if it would affect you badly but that is what I was thinking when I read your story. It may be nothing to worry about but I just wondered.
    On the positive note I think a lot of times it helps greatly with all the symptoms including the joint pain, I know I feel pretty good probably 95% of the time.
    I hope you will feel better soon and good luck, thank you for telling a great story, it’s these things that make me stay positive too. You’ll see by reading other stories and responses that people are all finding what works for them whether it be meds, natural, diet, or surgery, and we are all just happy to be relieved from those nasty UC symptoms.

    Kimberly

  2. Angela February 23, 2013 at 8:05 am #

    Hi Surviving!

    You are an inspiration! I would recommend remicade over humira. I have been on remicade with great success for 9 years now and you hear a lot more people having reactions to Humira than Remicade. Remicade does affect your immune system but does not shut it down entirely, its more specific than that. It inhibits a very specific part of your immune system unlike drugs like methotrexate which are much more widescale suppressors. I’ve never had a problem on it, no serious infections or reactions. And like Kimberly I feel great on it! And for some people remission can be achieved on it which is the goal. Because of your situation you should talk to your oncologist as well about Remicade, as its really important that both of your specialists are on the same page.

    For UC’ers cancer risks are two parts. It can be risks from the medications (usually very rare) but mostly it comes from UC being active. As long as your UC is active and damaging healthy cells it increases your risk of colon cancer especially when that’s been going on for years.

    Try Remicade first, if it doesn’t work surgery can always be considered. You know how big of a decision surgery is.

    I’m wishing you the best!

    Angela

    • KimberlyHI
      Kimberly February 23, 2013 at 11:34 am #

      Angela, I did not know that about remicade, good to know! As a new user I still get kind of nervous about it, that makes me feel better.

      • Angela February 23, 2013 at 3:21 pm #

        Yeah, Remicade’s risk labels are a little spooky but I’ll take them any day over being on methotrexate (which was once also used for abortions….probably not the best thing to be taking). You should still get things like a flu shot and pneumonia vaccine as precautions (although I hate shots and didn’t really start taking them until my doctor wasn’t too happy I hadn’t gotten one this winter and we all know how bad the flu was this year!). I’ve only had the flu once in the past 6-7 years and I caught it in Istanbul so I won’t blame that on the Remicade.

        I’ve been curious, because I never hear anyone who’s one Remicade mention them but do you get “pre-treatments” before your remicade IV? I’ve always gotten IV benadryl and an IV steroid to help minimize a chance of reaction and was curious if anyone else does.

        • KimberlyHI
          Kimberly February 23, 2013 at 6:46 pm #

          You sound like me Angela, I never get shots either because I hate needles so much, but then again after all these years with UC I am used to needles and IV’s now. I’ll start getting them starting next year :) My doctor told me I should at my last appt.
          Anyway, when I get my infusion, the nurse gives me benedryl and tylenol, in a pill form for both though, not in the IV. I get really sleepy too for the rest of the day after that! This last time I fell asleep in the clinic.

          • Angela February 24, 2013 at 7:29 am #

            Yeah I used to take the pill forms, then it seemed simpler and faster to do the IV drips. IV bendaryl really knocks your socks off, my sister always makes fun of me because at the beginning you start to slur your words before you fall asleep. She finds it very entertaining. Its good to hear others that others are taking it. I always thought it was common practice but when I wasn’t hearing about it, I wondered if that could be why some people hadn’t been responding well.

  3. bev February 23, 2013 at 8:40 am #

    Hi Surviving…

    Please incorporate a GOOD 50+ billion strain probiotic into your daily life! Really. Not only will it help the UC symptoms, but the gas and bloating too! A pleasant surprise and side effect of a GOOD probiotic (not yogurt, or the probitics that are just run of the mill)is that there is rarely any gas or bloating…OR smell!! No joke…I never have any ‘smell’ at all anymore…even when I go to teh bathroom…that old saying…’you think your s*** don’t stink’…well, it’s kinda true once that probiotic gets into your system…lol!! I’ve never said that on this site before, but what the heck. We’re all in the same boat here…

    Anyway, you have certainly been through the wringer, so to speak…chemo and radiation. Not very good for the body, for sure…but you are still here (!) and that’s what matters! I do not believe in medications to treat UC…they are dangerous and UC is NOT cancer. I think we need not poiuson our bodies with those sorst of drugs unless we actually HAVE cancer, you know what I mean? They are sometimes a neessary evil when we actually need treatment for cancer. Humira is an immune suppressant. Those are dangerous drugs, as you are well aware of. My doctor wanted me to try that when the asacol stopped working, but I opted out. No way, I said. I don’t have cancer…I’m not taking those types of drugs. I am off all meds and treating the UC with a good probiotic, L-glutamine, and vitamin D and astaxanthin. Things are going far better than they ever were on asacol, which made me even sicker for the 14 years that I was on it. 14 years that I cannot get back…

    Just my opinion. It sounds to me like you have been on enough medication in your life. Please think about that…you are the one in control of you!

    Cheers,
    Bev
    :)

  4. Jeff January 7, 2014 at 8:55 am #

    Surviving and commenters,

    I would like to share a bit of my wife’s story, hopefully it will give you more to think about when making your decisions. She was diagnosed with UC 4 years ago now, got into a bad flare, which responded to Prednisone once they got the diagnosis correct. She was healthy and relatively symptom free for 3 years after her first flare, while taking Lialda.

    In September of 2012, she flared again. It was a devastating flare. They finally tried Remicade with her, less than a month later she was hospitalized with Pneumonia for 13 days and had to have 3 blood transfusions. They restarted the Remicade, was hospitalized again because it was so slow to work. She was a little bit better over the summer of 2013 while on the Remicade, however in August of 2013, she felt an abnormality in her breast, and was subsequently diagnosed with Stage 2 breast cancer at the age of 29 with no family history. The decision was made to immediately remove her colon so she could endure the chemotherapy without a flare complicating things. This was done laproscopically (a miracle in itself), and she subsequently started Chemo treatments, which thankfully have worked to reduce the tumor up to this point. We strongly believe that the Remicade, Humira and all the other medicines she was on contributed to her getting cancer. As mentioned, she had no family history and was tested for the breast cancer gene, which came back negative. She hates living with her Ostomy bag, but she loves eating what she wants. Once she beats cancer, she will be getting the other 2 surgeries to create a J-Pouch. But the priority right now is to beat the cancer.

    You can read more about her story on her blog – http://www.dancingwithcolitis.blogspot.com

    Best of luck to you. UC is a terrible disease. My wife suffered far more dealing with UC symptoms than she has dealing with cancer.

    Jeff

    • bev January 7, 2014 at 9:26 am #

      Jeff…what an amazing post.

      I truly believe that these immune suppressing drugs are very very dangerous. I too believe that they can actually cause cancers.

      For the life of me, I do not know how people can allow these things to be put into their bodies to hopefully knock back an ulcerative colitis flare. To what end? It always comes back, and the drugs also stop working. In the meantime, you are potentially ruining your bodys’ cells, which can and often does lead to cancer. Where is the forethought?

      Before you all get angry with me…remember, I have UC too. I have had some awful flares too. It is too often said that ‘we’ should exhaust every possible treatment (even the dangerous ones) before we may decide on colon removal. Seriously??? TO WHAT END?? Do any of us REALLY want to HAVE to have chemotherapy and immune suppressors when we find out that NOW we have cancer???

      Think about this carefully before you let the doctor talk you into something that just does not seem right or add up.

      Again, thank you Jeff. I appreciate your post GREATLY.

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