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’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
I am well educated in the health sciences and sometimes give better advice than I take myself. I am a mother, a wife, a grandmother, and presently not working outside the home but do volunteer work in the community.
