Hanging in There After 25 Years

Charlene H fullIntro:

My name is Charlene. I’m 53 and have had UC for 25 years. My husband was in the navy during the early years of my UC and we moved a lot. A Navy doctor in San Diego was one of my best GI’s. I have seen many different GIs. I like a doctor that works with me as a team and respects me and my time. I have been with my current doctor since 1999.

Some more about me:

I am a stay at home mom and I homeschool my kids. I quilt and knit. I have been a Girl Scout leader and I Contra dance when I can. I have been married 32 years. We are originally from So. Cal. but we have been in Austin, TX the last 18 years. We just bought a travel trailer so we can camp and still have a bathroom close by.

Symptoms:

My symptoms are general pretty mild now. I currently experience joint pain, mild cramping, urgency, mucous, 2-3 BM’s per day and awful hemorrhoids.

25 Years of Colitis

I have had UC for 25 years. The first 11 years it only affected my descending colon. I was treated with sulfasalazine and the occasional Cortenema during flares. I had been given Prednisone once and the side effects (emotional swings) were horrible.

In 1999 I had a really bad flare. I lost 20 pounds in two weeks. I was in the process of changing GIs when this happened so the first time this doctor saw me, I looked like death warmed over. My UC had spread to my entire large intestine. The doctor convinced me to try Prednisone again. The mood swings were more manageable knowing what to expect. Once the flare was under control, we talked about other long term options. Immuno Suppressants were a new thing for UC so he put me on Imuran. I’ve been on it ever since. He also switched sulfasalazine to Asacol.

I have had what I call mini flares over the years; only a few times needing Prednisone to get them under control. The problem with Prednisone is that I gain 5-10 pounds every time I am on it and I don’t lose it afterward.

I often wonder what caused the big flare in 1999. My theory is aspirin. At that time, no doctor had told me that aspirin products can irritate the colon. In 1998 I had deep vein thromboses (blood clot) in my leg. No known cause, possibly hereditary. After 7 months on Coumadin, my Gen. Practitioner said I should take one aspirin per day. Five months later, I had my big flare.

I have never handled stress well and luckily I have been able to eliminate a lot of stress from my life. I am a stay at home mom and I homeschool my kids. No carpools or rushing around to be somewhere on time, no co-workers or boss, my kids are happy and well behaved, and I have the best husband on the planet.

Traveling is what gets me. I think the change in food, fast food, restaurants with unknown ingredients, does me in. About 6 days away from home and I can almost guarantee a mini flare.

I like to Contra dance but the jostling makes me feel like running to the bathroom. My husband and kids are so great. They are always ready to step in if I am doing something like cooking and need to run to the bathroom.

Even though my symptoms are general pretty mild now, I would love to be symptom free. I am starting the Specific Carbohydrate Diet to see if it helps. We’ll see how it goes.

Medications:

I am currently taking 150 mg Imuran and 4800 mg Asacol. These have worked pretty well for me. I also take Calcium, Vit D., Fish oil, multivitamin, probiotic. I am trying different probiotics; still looking for the best one for me.

written by Charlene H

submitted in the colitis venting area









8 Responses to Hanging in There After 25 Years

  1. Adam January 30, 2014 at 6:59 am #

    Hey Charlene,

    Thanks so much for charing:)

    I wish you the best with starting up the SCD diet.

    One thing that I hope will motivate you is with regards to traveling. I’ve been on the road now for over a year now(over six months in a VW van travelling US and Canada camping etc… and no flare up. Key part was staying in control of the foods going into my mouth. So…if you can, I’d highly suggest to take control of that as much as possible and don’t rely on restaurants (and definitely not fast food ones) to hook you up there.))

    Take care and keep us updated on how things go for you. YOU CAN DO IT!!!

    – Adam

  2. bev January 30, 2014 at 3:06 pm #

    Hi Charlene,

    Thank you so much for this! We should all be so grateful and happy thanks to you because you have had UC for 25 years and you still have your colon! I think a lot of people with UC worry that surgery is inevitable….and I know that it is not. It’s great to hear from UCers like yourself, who are still ‘okay’ after 25 years…and counting! I am 17 years in and I’m med free and feeling better now than I did the first 15.

    That is so heartening to hear and thank you again for sharing.

    :)

  3. Jennifer Schaeffer
    Jennifer January 30, 2014 at 6:21 pm #

    Hi! Thanks for sharing your story. I also get horrible hemorhoids – the constant bathroom visits cause them. I had surgery on them a year ago, and may need it again! Ugh!!! How do you deal with them? No one ever talks about THIS side effect.

    I also have a blood clot disorder but have to take a daily baby aspirin. Couldn’t go on the shots bc I also have a brain aneurism! The list goes on…take one thing to cure something but it causes issues with something else!

    Hang in there,

    Jen

    • Charlene H
      Charlene January 31, 2014 at 10:02 pm #

      Hi Jen,

      For hemorrhoids, after I wipe, I use witch hazel hemorrhoid pad then hemorrhoid cream.

      I’m sorry to hear about your aneurism. I worry about that happening. You’re right about the list going on. As a result of the DVT, I have lymphedema in my leg. Also, I was recently diagnosed with Scoliosis in my lower back. It is probably a result of the Osteopenia which is a drug side effect and genetic. What next?

      Oh well, life goes on!
      Charlene

  4. slingshot January 31, 2014 at 1:51 am #

    I’m using a specific probiotic that has 14 stams and 20 billion bacterias.
    innate flora 20-14 ultra strength
    – bifidobacterium longum (present in the human gastrointestinal tract)
    – lactobacillus acidophilus (occurs naturally in the human and animal gastrointestinal tract and mouth)
    – bifidobacterium infantis (B.lactis) (relieve including diarrhea and constipation) (http://www.medicalnewstoday.com/releases/46998.php)
    – lactobacillus lactis (production of buttermilk and cheese)
    – lactobacillus acidophilus DDS-1 (The DDS-1 strain of L. acidophilus has been shown by Dr. Shahani and others to naturally produce lactase, reduce serum cholesterol and suppress H. pylori (a bacteria known to be the principal cause of stomach ulcers))
    – lactobacillus reuteri (colonizing the intestines of healthy animals)
    – lactobacillus salivarius (probiotic potential has not yet been exploited)
    – streptococcus thermophilus (production of yogurt)
    – lactobacillus plantarum (commonly found in many fermented food products as well as anaerobic plant)
    – lactobacillus brevis (fermented foods and as normal microbiota)
    – bifidobacterium bifidum (occur naturally in the gut flora)
    – lactobacillus bulgaricus (for the production of yogurt)
    – lactobacillus casei (human preventing Clostridium difficile)
    – lactobacillus rhamnosus (avidity for human intestinal mucosal cells, and produces lactic acid.)

  5. Kimberly February 11, 2014 at 11:50 am #

    Charlene, I’m also in Austin, Texas. What GI have you been seeing? I’m considering a change in doctors. Thank you.

    • Charlene H
      Charlene February 12, 2014 at 3:36 pm #

      I see Dr. Scott Becker @ Austin Gastroenterolgy on James Casey/Ben White. There are several GIs in the office.

  6. Kimberly February 12, 2014 at 3:50 pm #

    Thanks you. I see Dr. Mona Lin Ridgeway there, but never get a warm feeling.

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