A Writer's Life Interrupted #crohns #ibd #uc

My doctor told me that you need to be on drugs to keep Crohn's from getting worse. When I ordered Uceris I was SHOCKED I say SHOCKED to find out the medication was 3300.00. I politely handed it back to the pharmacist and went complaining to my Facebook peeps. As always, they never let me down and thankfully I was able to get a discount on the drug. However, discount or not, I still haven't purchased it and this is the reason why.

​Uceris is mostly used to treat ulcerative colitis not Crohn's. It has a protective coating around the pill so it doesn't start to break apart until it reaches the colon. I have ulcers in my colon but not enough to bother me. In fact, other than some mild cramping and blood now and then I wouldn't even know they existed. Granted I live with exhaustion and some muscle pain, but do I really need to put another steroid into my body?

​The list of adverse side effects are:

1. Don't be around sick people
​2. Thinning skin
3. Easy bruising
4. Changes in body fat (now this made me laugh)
5. More acne (whoot!)
6. Facial hair (oh no! Not that again!)
​7. Impotence (I will have to tell my husband har har)

And before taking this medication tell your doctor if you are:

​1. Allergic to budesonide (how the heck do I know)
2. If I have or have had tuberculosis
​3. If I have a serious bacterial, viral, or fungal infection (not lately)
​4. Hirsutism
​5. High blood pressure (um yes)
​5. Liver disease
6. Stomach ulcer
7. Osteoporosis
8. Eczema (thank you Remicade)
9. Allergies
​10. History of diabetes, cataracts, or glaucoma.

***Grapefruit and grapefruit juice may interact with budesonide and lead to potentially dangerous effects.
​                              (Now, don't you think someone should have told me that?)

​***Chicken pox and measles can be serious and even fatal in people who take budesonide.

Here's another good one:

Side effects: ​Call your doctor at once if you have:

1. Thinning skin, bruising, increased acne or facial hair
2. Swelling in your ankles
3. Weakness, tiredness, light headedness
​4. Nausea, vomiting, rectal bleeding
5. blah blah blah

Common side effects

​1. Headache
​2. Nausea, stomach pain, gas, bloating, constipation (didn't they just say to call the doc if you have this?)
3. Tiredness (maybe not the same as weakness)
4. Acne
5. Cold symptoms

​So let's see: If I get to feeling like I have the flu or a cold or if I am tired and nauseous or I sprout a new mustache or beard or my ankles swell, get to the doctor ASAP. If I eat grapefruit or am exposed to the measles or chicken pox call the mortician  immediately.

​After considering the above and realizing that my 25.00 card is worthless and the real discount would drop the price of my medication to 1686.45 from 3300.00 which really is a good deal in the Uceris world, I decided to pass and stay on my diet which has worked REALLY well.

​I boil vegetables, eat limited amounts of fruit rarely, NO carbohydrates unless from a small potato or very small portion of noodles and protein of which I do allow beans (on occasion) because I just can't eat that much meat. My meals are small and I eat them 3 times a day with small amounts of nuts or seeds as snacks. When I say small, I mean small. The average American eats way too much food. We really don't need that much to survive. If Crohn's acts up I go liquid for 3 days and that usually shuts things down. I have managed to keep my weight stable by snacking on food I make myself using almond flour and cream cheese. It is amazing what you can do without sugar. If I do crave a bit of the sweets then it's Truvia which is plant based and doesn't raise my blood sugar.

​And so, my quest for a maintenance med will remain food. It can't hurt me and it certainly won't kill me if I eat grapefruit. I have promised my family I will call my doc immediately if things change and I am not ignorant enough to think that it won't because Crohn's will have its way. However, I can live with a limited diet as long as I cheat on occasion. After my battle with Remicade, I don't want another immune modifying drug in my system. Maybe surgery is the right option when you can't control Crohn's any longer. But I will have to think on that. Hopefully I'll have enough time to reach the right conclusion.

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