Yesterday at the specialist
DR: so how are things going?
Jolie: well you're not going to be happy with me. I went off the second (newer drug) at the end of June. The side effects were killing me. I kept on with the main drug
Dr: Well that's not good. What were the side effects?
Jolie: Migraines everyday that 6 to 8 Extra Strength Tylenol wouldn't even dent. Joint pain so bad it was a challenge to go up or down stairs, get in/out of my vehicle, sit down, sit up, walk. Morning sickness for 2 hours every morning. Dizziness. And complete exhaustion. I was down to working maybe 2 days a week and that was a struggle. and it didn't stop the primary symptoms of colitis completely. I was on the med for 10 weeks.
Dr: oh wow well this isn't good at all. so when you stopped taking the second med, how did you feel?
Jolie: Better. almost immediately. No more of any of those symptoms. I could walk a bit. I could DO things. I had some energy.
Dr: (after a long pause) Unfortunately, while you may feel better because those side effects are gone, the colitis is not. The relief from the primary symptom of colitis is probably only temporary and you are only experiencing that because of the benefits of that second drug.
Jolie *blinks, lots*
Dr: If we went into your colon, it would not be healed. You have whole colon ulcerative colitis. The main drugs you are still taking will not keep severe colitis like yours at bay. It's only a matter of time before you are sick again like you were at Christmas. Since you can't take this family of second drug with these kinds of side effects, we will have to explore the third (and final) level of drugs available.
She begins to rattle off a list of about 6 different kinds of meds we can try. Some are FDA approved in Canada. Some are not but are on trial basis. Some can make MS symptoms worse (which is in my family).Some are auto inject drugs. Some are IV infusion drugs where I would have to take a day or two off work each month to get. Some are trial drugs in case studies.All have side effects and who knows how they will affect me. These are the ones that will cost $30 000 a year and aren't covered. There is paperwork up the wazoo to get a small % of gov't assistance to pay for these meds. My eyes glaze over and I begin to cry.
Jolie: I honestly thought I was getting better.
We talked quite a while and I honestly was overwhelmed. Reality is that if I start a new drug with unknown side effects, I will have to take a leave from work. It isn't fair to me or to the students to have me sick like that at work.
Jolie: Can I just stay in denial for the rest of summer while I am feeling better and then we can see?
Dr: Absolutely.
She gave me a few pages to read on the different drugs because most of what she said was a cloud of confusion in my mind. I will go again in a month and we will see how I am feeling then. If I am not good, then decisions have to be made. If I am good, I want to ask for another month to see what back to work in September does to me.
Just feeling very sad that it is so bad. I read some blogs with folks with colitis, and some forums and it made me very depressed. Those with severe like I have often don't get to go back to work, they lose their colon and have to wear a bag or they get colon cancer.
12 comments:
Jolie - I have been reading your blog for quite some time but never commented. My husband also had ulcerative colitis - tried all meds for over 5 years, in and out of remission. It finally got so severe that the meds didn't work. He went on a clinical trial of Remicade. 2 weeks in he developed a fever and they had to pull him out of the trial. The only option was surgery to remove the colon. I can't describe to you the difference this has made in both our lives. I know it seems like a drastic measure and for most people it seems like the worst thing that can happen. Let me tell you that this gave him his life back. It's been 6 years and most times we forget he even has an ostomy, it really is nothing like you imagine. I know you are not at that stage yet, but I just wanted to let you know that there is a cure for your disease, removal of the colon does cure colitis. No more drugs, no more symptoms. I couldn't find your email address on the blog and I don't want to publish mine here but let me know if you would like to talk more. Take care and please don't despair.
Elaine
Anon - thank you so much for your comment. Made me cry but that's ok. I cry a lot these days it seems. Remicade is one of the options the dr gave me. I think it is the one she spoke the most about if I recall. I know there are lots of folks who have an ostomy and live amazing lives. Just hard to wrap my head around right now. I feel like I have wasted my whole life trying to get to a healthy weight cuz THEN I could do things I can't do now. But year after year passes and I don't seem to make any progress and still am not LIVING.
thank you for writing. I am so glad your husband is doing so well.
I am at joliereves at yahoo dot com
Wow, I'm so sorry you're dealing with all of this. I hope you are able to talk with your family and relax a bit this summer. It seems like you have a lot of options, and it would be best to take time to review them and reflect on what the best choice for you is. Best of luck to you.
I'm so sorry you're going through this. On the bright side, your doctor sounds AMAZING. I mean, actually *LISTENS* to you, gives you options, is understanding...
Hang in there!
Having a chronic health condition is stressful and I wouldn't wish it upon anyone in the world. I now understand a lot more of your post, I don't think I had ever heard what you suffered from. I'm really sorry you're going through this, I am. I hope you can take the summer off a bit and then try something else that might work a bit better. I hope you feel better and if you ever need anything, I'm here friend. *hugs*
Well, I don't have any similar experience to share with you, but I can tell from your post how low you are feeling right now. Know that everyone out here in cyberspace wishes you the best in whatever the future holds for you.
*hugs*
I'm so sorry to hear about the situation. It must be really tough. Dwell on the situation a bit but don't stay. Try to be optimistic. Maybe the next set of drugs will work and will be covered. Things have a way of working out. We're here for you Jolie and cheering you on as always.
RA-RA! q^___^p
I'm so sorry you're going through this Jolie. I don't have any advice but I wish you the very best of luck x
Don't remember how I found your blog, but I was so interested I went back to the beginning and read all your previous posts. I don't know how or if diet affects the colitis, but I have had a good experience following Whole30 plan.
I can only imagine how frustrated and tired you must be, and I wish you the very best. You have inspired me on your PF and personal journey and I just wanted to encourage you at this time!
Jean - MN
I'm so sorry to hear you're not well Jolie :( - I've been keeping you in my thoughts these past few months!
My Dad had a tumour in his colon last year; and total removal was one of the options. As Anon wrote, if your quality of life right now isn't great... dealing with the after-effects of a lifestyle change might actually improve your well-being. Don't despair too much yet!
It was really brave of you to share this; I will keep the good vibes going your way, xx
Aww... :( I'm so sorry that you're dealing with these health issues. It can be so stressful. ((hugs)) You're in my prayers, Jolie! Stay strong!!
One of my friends has really bad colitis (numerous blood transfusions) and one of the specialists she went to was all about natural remedies. He told her to start eating yogurt, 1 large tub a day (probably between 750-1000ml). I guess the natural bacteria in yogurt is similar to that in the colon and essentially you are tricking your body into realizing the bacteria is okay. I am not sure about the details but, it made a huge difference and she only rarely has attacks now.
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