Friday, April 3, 2009

Colitis checkup :(

I knew I was in for a talking to at this checkup. I made the dumb move of stopping my meds for a few weeks after the colitis was in remission. And sure enough it came back with a vengeance. Then just as I was getting it back under control with my meds again, we left for NZ and I left my meds sitting on the bathroom counter of my mother-in-laws. The colitis really punished me the first few days of our trip, and it was hopeless to have the prescription called in since the pharmacist there had never even heard of Lialda or Mesalamine, it's generic name. He gave me some over the counter meds and I took a constant dose of 800 mg. Ibuprofen to keep the swelling down, but still did not have a happy tummy.
To make matters worse the doctor pulled the good news I felt I had gotten after my last colonoscopy out from under me. The nurse called after that one and said that they had not found any biopsies showing dysplaysia. The first colonoscopy I had some biopsies that were indefinite for dysplaysia (pre-cancerous abnormal cell growth), the indefinite means there was something going wrong in cell growth but they couldn't confirm or deny if it was dysplaysia. Well since the second colonoscopy showed none of the biopsies as having any type of dysplaysia, I guess I had figured the first biopsies must have been fine, since it is more difficult to diagnose during an active phase of the disease. So I took the clear biopsies last time as an indication that since I was in remission, they would be more accurate and all was well. But apparently that was not the case. My doctor said that he has always taken the maximum numer of biopsies for each colonoscopy, but you can't sample the entire colon, it just isn't possible. So just because he didn't sample an area with dysplasia (definite or indefinite) this time does not mean that it wasn't there in the first place or isn't there still. They just didn't catch it in a biopsy. He also warned that one pathologist to another could have very different opinions about a sample. To one pathologist they would be less concerned or more concerned about a sample it is VERY subjective. Then he started drawing timelines again for me on a pad of paper showing the progression of colitis all the way over to cancer. Putting me about in the middle, but cautioning me that my colitis seems to be more aggressive than he would typically expect for a patient with my duration of the disease. So no matter what I would HAVE to take my meds all the time, I can lessen my dosage a bit during remissions, but never go off it completely. Because the more my colon stays inflammed the greater my cancer risks are.
So I am just trying not to freak out too bad, I am not there yet. There is so much I can do to take better care of myself, I just can't get too complacent again. I feel like such a baby for feeling so sorry for myself all over again. I have so much to be grateful for. Some people have U.C. so bad they can barely function or have to go on hard core steroids, and my meds have been working. It just sucks to have your mortality thrown in your face every three months. You feel like you're living with a ticking time bomb inside you're body. You don't know when it's going to blow or if it even will. And just getting used to the ups and downs and mention of yourself so close to the "C" word. Watching the doctors fearful expressions and the nurses being extra nice to you as you come out of the examination room. You don't know if you're just imagining it all because you're scared, or just desperate for any clue of how scared should I be about my situation. I ask about percentages and likelyhoods, to find some gauge, but at the end of the day all I can do is the best I can to take care of myself. My next colonoscopy is the 4th of June, so hopefully that will shed a little more light on this confusing and complicated disease. So I guess I'll just take it one test at a time. We didn't come here to Earth to know what the next day will bring, just the reassurance that whatever comes along we are not alone. I have been given some great promises through answers to prayer and all I can do is have faith in that plan for me. Thanks for your prayers, sorry for being such a blubbering idiot. I don't think I have any filters when my emotions get the best of me (or anytime actually), so I just write and write and write. Some kind of therapy maybe I don't know. But I'll keep ya'll posted

11 comments:

Eileen said...

I was assuming no news was good news. I'm sorry for all the stress you must feel.

You are loved!

Bonny said...

That is so stressful. I went through that with cervical dysplasia and even though things have been good for a few years I still freak out over every pap smear, though it never caused me any type of pain. I'm sorry you are feeling so stressed and I'm glad that writing helps. It does for me too. I'll probably be having my baby that day so I'll try to think of you. :)

Jenni said...

This sucks Courtney...I'm sorry to hear the news. I was under the impression no news was good news, like Eileen.

Hiatts said...

I am so sorry that it is all back. Love ya! looks like you had fun in NZ!

Hayley said...

So I'm sitting her at 12:45 on my couch just sobbing. I just thought things were better. I am so sick of people being sick! I wish it wasn't so late, I would come and give you a squeeze (if anything to make myself feel better for not asking you how you've been lately!) I'm a crappy friend! And I totally understand facing your mortality every 3 months. It is terrifying. Let's make a deal, you pray for us and we will pray for you?? I'm taking Cate for a while next week so you can have a pity day. In your pj's. With chocolate. and you can paint your toenails. and watch a chick flick...

Unknown said...

Courtney, I hope everything goes well. I will be thinking of you. btw your trip to New Zeland looked amazing, that would be such a cool place to go.

McCabe Family said...

Bummer. I was really happy about the good news last time. But I guess it makes you rethink things some and that is always good. You guys are always in our prayers. I am so sad we missed you, and my kids were quite upset that they did not get to see their Guymon cousins. Your trip looked amazing...I will have to live through you on these trips I don't see Camcor sending us anywhere anytime soon!!! Miss you guys lots and lots.

PS where is the post about your new wood floor and update addition info. I am dying to see some.

T-licious D-zire and C-hillins said...

Hey Court,
I'm praying for you. I love your openess and how you share your feelings. I think it is theraputic and very important. Stay positive. The doctors have to be precautionary (and so do you, somewhat). The doctors can't factor in the love and support that will help your body heal, the prayers that will help bring you good health. As a sweet priesthood leader said in a blessing for Toby when was "supposed" to die... "Heavenly Father is your true physician - Look to Him". You are a strong and incredible woman, so don't let this get you down. We love you lots and are praying for you, always.

Candace said...

I am so sorry. I am sorry for all the stress. I hope you know that I am always here for you and that I hope everything goes better.

Janalee Hubbard said...

Ugh. Life is full of ups and downs, and this really sucks and you are entitled to some major "ups" to balance it out. Focus on taking care of YOU, and we'll pray for some good news.
Love you!

Mandi Moon said...

So I take it you are going to be taking your meds now! =) It's not fun taking pills everyday, but sometimes it's worth it. I hope your next fun filled colonoscopy goes well.
Remember, brush teeth...take pills.
I don't envy what you and Hayley have to deal with everyday. I know there is a blessing in there somewhere for you guys! That's the way it works right???? =)