Patient Story: 3 Tips for Newly Diagnosed IBD'ers

Hi everyone!

My Name is Meranda Roben O'Hara , I write the blog "My IBD Life" on WordPress. The blog is a place where I like to share my opinions on different topics relevant to the IBD community. It is also I place where I can vent and share personal stories in hopes that through this I will inspire others with IBD to be more open with themselves and be confident in who they are!

Here's my diagnosis story; Growing up, aside from the occasional cold here and there, I was a healthy active child. Looking back, the earliest I can remember starting to show potential signs of IBD would be around age 12. I remember having acid reflux quite often and having very painful bowel movements. However, I ignored this mainly because it wasn't to the point where it was interrupting my day-to-day life; it would come and go. I did not start having more severe symptoms until about half way through high school around the age of 15. It started off as lingering diarrhea, acid reflux, fluctuating weight, joint/abdominal pain and skin issues. Again, I did not think much of this and kept these issues to myself, thinking it would all just pass. The severity of these symptoms was on and off. I could go months feeling okay.

Fast forward to when I was 16, I got this awful throat infection which lead me to go see a doctor, However, I irresponsibly did not disclose any of my other symptoms to the doctor at this point. After the antibiotics cleared up the infection I tried to go about my normal life, finishing my school, etc. but the symptoms at this point were interfering with my day to day life, the lingering diarrhea and acid reflux were at an all time high. So, I went to the local clinic and was told I have C-diff. I was given antibiotics and something for the acid reflux which seemed to work okay for a while. Once a few months passed the acid reflux was to the point where I could not eat. I had begun losing a gross amount of weight. I lost 30 pounds in under 2 months. I was using the restroom anywhere from 10 to 20 times a day and had these scary looking large red lumps appearing on my legs. I knew something was really wrong with me but I am one of those people who ignores being ill. I hated going to see the doctor and for some reason this was the time were I was more dedicated to school then ever - "I swear I did not miss a day!" Luckily, I had his wonderful teacher who stepped up one day after class and basically called me an idiot for ignoring what was happening to my body. I took her advice and went to the clinic that evening where they took one look at me and told me to go the hospital and get checked out.

If you want to read about my experience at the hospital read this blog entry I wrote a while back: My very first stool sample.

Long story short I was given an appointment for a colonoscopy and was diagnosed with Crohn's disease & rheumatoid arthritis on April 11 2012. Yay!

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I was lucky in the way of medications. My IBD took very well to the prednisone and then very well to 6MP which am still on to this day. I hit remission last year which lasted for a few months. I am no long considered in remission and my GI is saying that my body is beginning to become immune to 6MP and we may need to move on to Remicade or Humira once my IBD flares up. However, most of my symptoms are still relatively under control at this point.

The main issue I am dealing with is the rheumatoid arthritis. Aside from taking an excessive amount of Tylenol, I am not being treated for the RA. I recently spoke with my GI & he is concerned that the medications used to treat RA will negatively affect my IBD, leaving us on a standstill in that aspect. The RA is not noticeable daily; it comes and goes. Weather seems to be a huge factor for me.

I am trying to find natural ways to treat the RA myself as of now I am not having very much luck. I force myself to exercise everyday even though it can be painful during/after the workouts. I know that in the long term I will be better off doing so. Yoga seems to help as well as hot baths.

RA is a tricky thing to get a handle on in my opinion. I wrote a shortish entry on "MY IBD Life" about my opinions/struggles with RA and IBD. You can check it out here: Dr.Phil Has segments on IBD & now Rheumatoid Arthritis!

As for advocacy I try to spread the word of IBD as much as I can, through my blog and by being open with others about my IBD. I try not to sugar coat it either. I also started a localized support group on Facebook for the provinces of Quebec and New Brunswick, for people suffering from IBD and/or caregivers/family members. Within the support group we have our own Gutsy Walk team called "Flushing IBD Away" I am looking forward to holding a few bake sales in order to reach our goal this year.

I'll end this by giving three tips to newly diagnosed IBDers:

1. Do not ignore symptoms!...especially if you have a relative with IBD. Trust your "gut" instinct. It is better to get checked out and be wrong than to ignore it and be right.

2. Don't be embarrassed about your symptoms…just don't!

3. Before going to see your GI, make a list of questions. That way you will not forget anything important.

Thanks so much for taking the time to read this!

Follow me:
Twitter: @MerandaRoben
WordPress: My IBD Life

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