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Faulty Immune System and Too Many Medications

I am in complete remission at this moment :))

– I love sharing projects with friends – arts and crafts, gardening, cooking, enjoy learning new things, being outside, and traveling to different places. I do get anxious about traveling because I often get a flare-up while traveling.

Robin getting her cook on in the kitchen!!

Robin getting her cook on in the kitchen!!

Robin’s Story:

Sorry Adam, but I am starting my story with my medications because in a way I feel this is the basics to this story. Many can consider me lucky because I am in complete remission and just about have been during my 2.5 years on Remicade and 2 Lialda daily. It seems a small price to pay with seemingly no side effects and my insurance covers the cost of the Remicade (I pay a ton for cost of insurance). I had trouble getting into remission about 5 years ago and was very sick for about a year during which I had to quit working. I worked in long term care and picked up C. Diff twice!

When I was diagnosed with UC, back 15 years ago as an adult I was simultaneously diagnosed with depression and it took months for the docs to convince me to take antidepressants because I thought I could “overcome” the depression naturally or on my own. I was also going through a very stressful period in my life. I totally believe the depression and UC go hand-in-hand and that leaky gut stuff theory sounds very reasonable.

Fast-forward 15 years later, my docs never really monitored the anti-depressant and I stopped feeling like I needed it. I was on Celexa and weaned off it this past summer. Instead of feeling depressed, I had bizzaro weird emotions that I felt were definitely based on Serotonin and neurotransmitter stuff. My primary care doc tried a few antidepressant drugs and my biggest complaint was over-stimulation and inability to sleep. It is awful trying drug after drug that is not a good fit, but I did find something that made me feel better. The problem is I still can’t sleep so now need to take a pill to help me sleep more than 5 hours a night.

I also developed another autoimmune disease a year ago, Lichen planus. It is dermatological and although I get flare up of this skin disorder, the doc (and I) think it is kept in check with Remicade useage. I use topical medication for this.

So here I am with Remicade, major antidepressant therapy, a pill for sleep, a CPAP machine, gross flaking skin treatments – did I mention LOW Vitamin D levels (16) and early Osteoarthritis – and I KNOW it is all interrelated autoimmune system foul-up out of control. I am so deep in the medication thing and longingly read posts about giving a more natural therapy a chance. The truth is that sometimes medicines are just easier and I am afraid to give them up.

When I change my diet and go grain free, sugar free I do feel much better. That is a change I need to stick to, easier said than done. I am not asking for a quick answer, I want to hear some other folks share honestly about how they are getting through their struggles. No sugar-coating! The funny thing is, if you look at me I look healthy and strong although I am 40 pounds overweight…Feedback and Support please.

More Medical Treatment info:

I had allergy testing and in the past eliminated corn, gluten, dairy and felt good with these restrictions.
I have tried SCD, but was hard to stick to over long periods of time.
Can tolerate some bread and gluten occasionally and it is funny that the gluten-free breads and baked good give me gas and bloat!

I take probiotics occasionally, but I can’t really tell a difference.

written by Robin S

submitted in the colitis venting area




lialda, Remicade

7 Responses to Faulty Immune System and Too Many Medications

  1. Meg May 13, 2016 at 10:55 am #

    Do you think the Remicade caused your other problems

    • Robin S
      Robin S May 14, 2016 at 6:19 pm #

      Meg, The only thing I think Remicade caused or influenced is low Vitamin D levels. As I mentioned, since Remicade tamps down autoimmune diseases my skin condition may be worse if I was not on Remicade. The other issues pre-dated the Remicade or are known side effects of other drugs.
      Robin

  2. Rosanne
    Rosanne May 13, 2016 at 9:03 pm #

    Thank you for sharing your story. Very informative! My thoughts are whatever you need to do that keeps you in remission….
    Quality of life life counts!
    I take meds…prednisone, apriso, mercaptopurine. A host of supplements also.
    Been on prednisone 34 years. Blessed that no bad things have happened from it. Again it is quality of life! Prednisone has helped me immensely.
    Funny how we have this serious illness….but carry extra weight…makes people believe you aren’t really sick!
    Best wishes and good health!

  3. Robin S
    Robin S May 14, 2016 at 6:22 pm #

    Rosanne, Thanks for the response. So glad your drugs are helping you. Prednisone makes it hard to lose weight. Being on it so long can affect your bones, so I hope your doc has you do a bone density scan and see if you are within normal range. Robin

  4. Graham from England
    Graham Lee May 15, 2016 at 1:08 am #

    Hi Robin,

    I wanted to suggest something you may wish to look into. I have found Extra Virgin Olive Oil wonderful for my UC and health in so many ways.

    Some of the more unknown benefits are that it helps with the absorption of vitamin D, it is amazing for skin conditions when used internally or externally and studies have shown it helps with weightloss when substituted for other fats.

    It is an incredible natural anti inflammatory and much more. You need the good stuff though and you can search EVOO Colitis here or on Google for some of my more specific UC posts.

    Good health!

  5. Robin S
    Robin S May 15, 2016 at 5:57 am #

    Thanks Graham. I love using EVOO, but never heard it having health benefits for Colitis. I will check it out now. Vitamin D, like Vitamins A,E, and K all are fat loving and are better absorbed when ingested with a fat source.

  6. Graham from England
    Graham Lee May 15, 2016 at 6:24 am #

    Indeed they are, this link is the newer post. http://www.ihaveuc.com/evoo-2/

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