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Recently Diagnosed and Still Learning

Intro:

I am a recently married 52 year young woman who until being diagnosed with Ulcerative Colitis was very strong and healthy. My husband and I love going out of town often on road trips to visit friends. Now he mostly goes by himself as I usually am too unsure to go.

Some more about Brenda:

Hello, I am from Ontario. I was just married this past June. I love camping and traveling. I like to spend time with friends and family. I’m told I don’t act my age. {can be good and bad} ha.

Symptoms:

I am currently coming of the prednisone again so my symptoms are pretty good right now. Mostly a bit of pain when things are moving and still urgency.

My Story:

I was diagnosed in June 2012. I started to think something wasn’t right before xmas. But when the blood showed up in February I went to the Doctors. I was referred to an Internist who performed a colonoscopy which showed UC. This is when the meds began. 8 grams of Asacol per day. I started loosing a lot of weight and having to take time off work. I was then prescribed the Steroid Enemas. Yuk. The urgency I had since the beginning didn’t alow me to keep it in. More wasted money as I gave the Naturopath Doc a try. $1000 later with a variety of products including Aloe Vera, probiotics, to name a couple.

This is probably a year later when the Imuran was prescribed. I had a thing with my self that If I had to go to the bathroom 5 times then I would go home. So in 2013 my salary was about $5000 less due to missed work. I then tried the Nutribullet and wizzed up kale, flax seeds, nuts, protein powders, fruits, antioxidant ingredients. I think all this made me worse. Early this year I finally gave in and started taking prednisone at 40mg/day for 2 weeks. I had an upcoming holiday and I really wanted and needed to be well. It involved a 4 hour road trip. I could not believe how much better I felt after only 2 days. OMG. What a relief. I didn’t realize just how bad I felt till I felt better. Then after the 9 week taper off my symptoms came right back.

Then I was getting married in June and I really wanted and needed to be well for that. So I asked my Doctor to prescribe the prednisone again this time he gave me 50 mg/day and so on. My wedding was awesome and we are very happy.

Once again after the taper off symptoms came right back. All this time I have been on the Methotrexate also. My hair was so brittle falling out and just looked awful as did I when the prednisone was done. I forgot to mention that I have had about 5 accidents during the 3 years. So I am usually even afraid to go grocery shopping its all I can do to get to work, make it through work and get home again. For about a year that is all I did.

Then my upcoming honeymoon 9 days on the beautiful Vancouver Island. That’s right a plane and airport and shuttle and road trips and mountains and lakes and all that. What was I thinking? I went to my Doctor and begged for one last round of prednisone for this trip. He obliged me and our honeymoon was fantastic. What a blessing it was. I am so blessed to have a great supporting husband.

I have been on Remicade now since March 2014. So as you have heard it has not fully put me in remission as of yet. I am still hopeful though because everyone else there is on 6 week intervals and I am on 8. So my next Doctor apt I plan to ask for infusion every 6 weeks.

I am currently at 30mg of pred on my way to none. Hopefully never again for any of the other meds.

Medications / Supplements:

I am very undecided about the Asacol, Imuran, Methotrexate, Steroid Enemas, and all the Naturopathic products I was convinced to try. I am not sure any of these products helped much if at all.

written by Brenda W

submitted in the colitis venting area




13 Responses to Recently Diagnosed and Still Learning

  1. StormCat October 28, 2014 at 3:04 am #

    Welcome Brenda! There are so many of us here who are in the same boat you are… And that seems to help when you know you’re not alone… I’m in my 3rd flare in 2.5 years and this one is really getting to me… I was doing great with 6MP and diet, until I got a hold of something that was SUPPOSED to be gluten free (gluten is a trigger for me) and it wasn’t… It threw me into the hospital and home for the last month! Like you, prednisone works great for me! My GI doesn’t like to leave me on it for very long, but I’ve had to get him to work with me on this one, because of the nature of how it got started….
    Like you, it makes me nervous to travel anymore, so I have to leave plenty of time available for my body to tell me where it’s at for the day… OH and learn to listen to that body! That’s how my accidents happen… I think I’m good, I’m ok, and the whole time my body is saying “Noooooo you’re not!” LOL
    Hang in there, Brenda! It sounds like you’ve got a good Doc there! I had one until he retired… His replacement? Not so much… :) It’ll get better eventually… It just takes time, patience, friends, and LOTS of TP!!!! :)

  2. Brenda W
    Brenda M October 28, 2014 at 3:54 pm #

    Thanks so much StormCat for your positive encouragement.
    I have changed my name here from Brenda W to Brenda M as I am still getting used to my name change.
    I went 2 years without eating any meats, seeds, nuts, chips, popcorn or fried food at all. Then after going into remission while on prednisone I started eating some chicken. It had never tasted sooooooo good. Then I got really brave and tried some French fries. OMGoodness. I think I can eat some foods while healthy that I would not risk at all when in a flare.
    And to clarify some of my story I really did not have any relief from this disease until this past spring when I tried the prednisone.
    As I had said previously I have been on the pred most of this year and just in the past couple of weeks I am noticing the bad side affects beside the weight gain. I am having a really hard time with negative feelings. My mind wants me to quit everything and just give up. But I know that all feelings eventually pass good and bad. So I just try to keep a low profile and ride it out!
    peace

  3. Judith K
    Judith Kupstis October 28, 2014 at 5:37 pm #

    Met with my gastroenterologist yesterday to review the results of my recent unsuccessful colonoscopy. I am scheduled for the removal of my colon and rectum next Thursday. I have been “managing” my UC for 28 years, having “routine” colonoscopies every year for the last 10. Now I have dysplasia, and multiple strictures blocking my colon. I asked her if I could have anticipated this outcome from my test results of just a year ago. She said “no way”!! However, because of the many years of UC, this is the best option for me. I guess, my point is, do not avoid the colonoscopies that are recommended for you. Find a good Doctor, and if one retires (2 of mine did), find another! Although it’s a major surgery, and I am terrified, I am hopefully going to end up with a better quality of life!! And in the event that there is cancerous tissue there, that will be coming out right along with that colon that has given me nothing but trouble and embarrassment for the past 28 years!!

    Brenda,at 52, and newly diagnosed, my hope for you will be a completely different outcome. Where a “Real” cure will be found for this insidious disease!! Best of luck on your journey, and God Bless!!!! Judy K

    • Lori October 29, 2014 at 4:52 am #

      Morning Judith,
      I’m truly sorry for your struggle these past 28 years! I know this struggle as well, and would never wish this disease on my worst enemy!! Everyone here truly understands, I can only tell you that when you wake up from the surgery, you will have your life back. :) I had dysphasia as well, and had my colonoscopy every 2 years, the ups and downs for 16 years were taking its toll on my body. The drugs that were supposed to keep this disease under control was doing damage in other parts of my body, my G.I. Doc said my body can not handle them anymore! My colon was over 90% diseased at this point so this surgery saved my life. My doctor always made it very clear that my UC will never be cured, only managed! It is a disease just like diabetes. I think I get an A for effort these past 16 years! I took all my meds, changed diet, removed stress, and exercised!! Unfortunately, the cure is the removal of the colon.

      Brenda, I am keeping you in my thoughts and prayers! So much support and information is here for you on this forum!!

      • Brenda W
        Brenda M October 29, 2014 at 3:48 pm #

        Hi Lori, thanks for reminding me about the stress and relaxing. I’m soooo bad at this. I’m enjoying the forum very much already! Thank you for sharing your stories, knowledge, well wishes, prayers and encouragement. Take care and GB. Peace

        • Lori October 29, 2014 at 4:28 pm #

          Hi Brenda!
          Thank you, and thank you for sharing your story!! I was off all meds for a few years while really watching my stress + diet, and was managing okay. :) Life threw me a curve ball with the loss of my beautiful sister Jennifer in 2008, and that stress just set me back. I, at that point was worried about ALL the drugs I was on since 1998, and wanted to give my body a break! I had to go back to Prednisone and everything else because I was just so sick. I have learned SO much from having UC. Our body’s don’t always come into this world perfect. I have met and continue to meet such strong and wonderful individuals! I feel it was the right time and place in my life for me to part with my disease, I never will forget what it has taught me!! :) Please keep letting all of us know how things are going. <3

    • Brenda W
      Brenda M October 29, 2014 at 3:37 pm #

      Hi Judy, I hope for you a speedy recovery and the best possible outcome from your surgery. Please let us know how you make out. That is a long time to go through all the horrors of this disease ” Wow a cure”, yes that will be a miracle. Thank you for your well wishes and encouragement. GB you as well. Peace

  4. Judith K
    Judith Kupstis October 29, 2014 at 6:15 am #

    Thank you, Lori for your kind comments. I will let you know how my surgery goes. I hope for a good outcome and a chance to move on with my life. I am blessed to have supportive people in my life!! Thank you. Judy K

    • Avital October 30, 2014 at 3:49 am #

      Hello Judith,
      As our surgeries approach next week, I wish you luck and smooth, speedy recovery. I’m looking forward to a healthy life without meds, having developed adrenal insufficiency, I will have to take meds for that for a while, hope not for too long….as time approaches I m getting emotional here and there, reading so many posts makes me question if if I have UC or Chrones…all that is bugging me down at the moment …thinking if I had Chrones in 17 years, it woul rear its ugly head?!! Oh well, we UCrs are troopers and will come out in top!! Wish you the best Judith and will be in touch post surgery.?
      Lori, you are my inspiration, although I understand you probably have ups and downs like all of us, you sound so upbeat and that’s the key to good healing and wellbeing!! Keep it up!! Appreciate your inrmous contribution to this forum and our support! G-d bless!!
      Brenda M, your fight just began, be strong, proactive, ask questions, and help yourself by reading everything you can get your hands on, Good GI can help you by doing a good scope and giving you proper diagnosis, treatment is a crap shoot, we are all different, what works for one may not always work fir others. Diet, and stress are huge factors in Balancing UC, its a tough road, but people manage, and you will too!!

      • Judith K
        Judith Kupstis October 30, 2014 at 5:11 am #

        Avi, I saw my GI this week to go over everything once more before surgery next week. I asked the question about Crohns disease because like you, I have been seeing so much about it on this site. She said that there has never been a diagnosis of Crohns disease for me. It’s UC that I have. I think when we read so much prior to surgery, it’s common to question whether we are doing the right thing, That’s why it’s so important to have trust in your doctors. She was able to give me the reassurance I need that surgery is necessary for me. I will definitely be in touch when I can before and after. You are in my thoughts and prayers!!

      • Lori October 30, 2014 at 5:36 am #

        To Judith and Avi,
        I will say a special prayer for each of you! Get ready to wake up UC free!! :) I have had ups and downs my whole 16 years with UC. When I was first diagnosed, I did not want to leave my house for more then an hour at a time. I had 5 blood transfusions in the first 6 years. I weighted 90 pounds for close to 8 years, lost almost all my hair because of malabsorption and drugs, 6mp was brutal for me. Had an allergic reaction to Remicade. I went gluten free in 2006, that was serious torture ;) I would dream of eating warm French bread with tons of butter every night! I can honestly say I consider myself lucky after reading others struggles here!! Please keep posting, sending all my love and positive thoughts to the both of you.

      • Brenda W
        Brenda M November 7, 2014 at 4:32 am #

        Thanks so much Adam for this forum. What a great relief it is to finally after 2.5 years to actually hear from ppl who have this disease. It is comforting to relate to ppl who have been there. Even at my Remicade apt there are usually ppl there with Arthritis not UC.
        I hope both you women are recovering nicely from your surgeries. You are like mentors for us who are newbies. 2 more weeks of pred then we will see if the Remicade has kicked in. Fingers are crossed. I am up 20 lbs this round so I’m looking forward to loosing that AGAIN.
        Take care all. Peace

  5. Brenda W
    Brenda M January 4, 2015 at 10:25 am #

    Just a quick post. Shhhhhhh don’t say it out loud but I think the Remicade and Imuran combo are working. Don’t say it out loud though because every time I do I relapse again. Scope booked for early February.
    Thanks so much again Adam all this info is brilliant!
    love and peace to all

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