Anyone that has suffered with any autoimmune gastrointestinal disease knows what it is like to work day in and day out with this horrible condition. We suffer in silence a lot because the subject is not pleasant to talk about with co-workers.
I have been dealing with this disease for 32 years and have some good days and some bad days. You can feel great one minute and then go the other way quite quickly. The only comparison is to the stomach flu when trying to describe it to anyone. The bad thing about this disease is that it not only affects the bowel. It can affect your eyesight, skin, joints and muscles. The side effects from all the medicine can also affect these symptoms.
We still want to get up and go to work, so we still have some resemblance to a normal life, and this disease will not beat us. In my situation, I have had some good experiences with my medical care and then not so well. You need to take control of your health and body and research on your own. Do not be afraid to ask questions of your doctor. It is helpful to write things down before your doctor’s appointment to not forget what you want to ask.
You also need to be direct with your caregiver about trying alternative options if the normal treatments do not work. I am fortunate enough to have a wonderful gastroenterologist who takes the time to listen and discuss my treatment with me. You need to be your own advocate and find a physician that will listen to you, and you need to be honest with your physician.
There are a lot of treatments out there. Remicade, Imuran, Humira, Entyvio, Stellara and Xeljanz. There are new treatments coming out all the time. It is crucial that if you have any symptoms of changes in bowel movements, bloating, and blood in stool, constipation, diarrhea, or urgency, please tell your physician and make an appointment. It is so important that you get a colonoscopy, especially if any colon issues run in your family.
Approximately 780,000 Americans currently have Crohn’s, and 907,000 have Ulcerative Colitis. It is a possibility that you know or work with someone that has this disease. Just as a suggestion, here are some things you should not say to someone who is dealing with this condition:
“You do not look sick…”
“Have you tried Aloe Vera…”
“Should you be eating that…”
“Why are you so tired…”
It is essential that you have a Colonoscopy if you have any symptoms, and if you are over 50, you should have a screening. Take care of your health for yourself and your family!
Patient Access Benefits Advisor/Registrar
Blanchard Valley Health System