The Silent Sufferers

Crohn's disease is often called "The Silent Sufferers" disease. This is because it affects parts of the body that are embarrassing and uncomfortable to talk about. Body parts that are on the inside and unseen by others. It is difficult for others to see and understand the pain, the ulcers lining the intestines and the inflammation that causes sometimes debilitating stomach cramps, nausea, diarrhea, loss of blood in stool, extraintestinal manifestations (other organ systems that are affected by Crohn's) and so on. I would also say that Crohn's is a disability that feels invisible. People often like to see to believe.

I have heard others who have autoimmune diseases say that it would be easier to get empathy for their daily struggle if their arm was cut off, because that disability is more visible and understandable for the public.

Although I am thankfully able to hold a full-time job, be happily married, travel, and live a normal life, I still struggle. It it just not as visible as if my arm were cut off. (please note that I am not saying that I would rather my arm be cut off, it is just a good analogy).

All Crohn's sufferers and anyone who has a chronic illness asks for is empathy and understanding. And if you don't understand, acknowledge that. You simply don't understand. I would rather hear that you don't understand than "just suck it up," "you're being a wimp," "just eat the right foods," "why aren't your medications working?" If you don't know what to say, my suggestion would be, "i'm sorry, that must be tough."

This week was a rough one for me. Ever since I was diagnosed with Crohn's, I have also been suffering with migraine headaches. I'm not sure if they are related or not, but wouldn't be surprised. They could be related to drugs I'm taking. Who knows. Or maybe it's age. In my last blog post, I mentioned this migraine headache issue. I decided to go see my primary care physician last Tuesday about my head that is aching so much, weekly and nearly daily.

Here is what I am trying right now:

In January, I switched birth control brands from Microgestin to Junel, so I decicded to go back to Microgestin since that is when my headaches started to get worse.

I also decided to try some sinus clearing methods to make sure it is not allergy/sinus related headaches.

My doctor also gave my prescription for Topamax, a migraine prevention drug, to try. I tried it for 4 days, and could not stand the drug. I absolutely hated the side effects. I could not funtion. I felt buzzed and drunk, couldn't concentrate, and my body felt tingly and numb. Ick!

Another extrainstestinal issue I am dealing with as a result of my Crohn's is mild rosacea on my face. Metronidazole has not seemed to be working, Eucerin bedtime redness relief doesn't seem to do much, I need a new moisturizer that heals my redness and dryness. I get tired of spending money on products.

Right now, I am trying some samples of face cream called Natura Bisse, which is really expensive, and next I am going to try some samples I have of Bobbi Brown face cream, which around $50 I believe. the Natura Bisse stuff just in two days has made my skin more calm. It doesn't seem as dry, red and seems more smooth.

Does anyone know of any other skin care line that might have this same affect, but less than $100??

Friday, I was feeling my worst. Topamax was at its worst in my body. For some reason my intestines decided to flare that day and I was not feeling well, and my skin just did not feel pretty. I cried in my car at lunch. I know everyone has these kind of days where everything just comes to together all at once. Life can get overwhelming sometimes - regardless of if you are dealing with an illness or not.