Insurance doesn't cover Humira

[kansas]

Just thought I might open a thread and say hello to you all. I am 30 and just recently got diagnosed with UC. Been doing the medication and trying to get back to normal, but the docs are not really supper impressed with my progress. I had what I thought was an abcesss that has been draining for over a week, but next week will get another CT scan and possible 2nd colonoscopy and most likely they are gonna tell me it is a fistula which would put me in the crones category. I have the whole morning trouble passing diarrhea and abdominal pain, using percocet for the pain, lost 30 pounds and trying to get sleep at night. Kinda just getting use to the whole idea of a lifestyle change and it has been pretty tough realizing that some things in my life will be different. Its kinda weird how things in life can just flip on a dime and your forced to accept new circumstances. Right now it all seems a little daunting. Doing a lot of reading on what this is all about facts and figures and the like. Just wondering about if things get back to normal for you all. Also, my doc is moving towards getting me on Humara, but my insurance doesn't cover it and it just goes towards my deductible. Pretty expensive stuff....more than my house mortgage. Anyway just thought I would say hello and I am happy there is a community out there for discussion on this stuff. Been reading some of the threads out there and it is nice to know that people can actually get along with this condition.
Thanks

 

[misscris]

:welcome: Kansas. This is a great forum to be in. Lots of friendly people and a wealth of information.

 

[beth]

Greetings kansas!

 

[crohnsappleadams]

Hey Kansas, who's your gastroenterologist?

 

[Lisa5326]

Welcome to the group Kansas!

 

[kansas]

To chronesappleadams and others

My gastro guy is Dr. Travis Dierenfeldt
Thanks for the welcome guys.
Just a quick question.....do you feel like some people tell you to eat one thing and others tell you the exact opposite?
I guess it is a trial and error for everyone at the first go around.
What do you think about Humara and do you know any cheap ways to get it if your insurance doesn't really help out with injection meds?
Also, I am feeling kinda bad for the amount of pain meds I am taking right now for the abdominal pain......anyone else go through that in the beginning?
Lastly, after you get things right again and are watching what you eat.....does life kinda get back to normal?
Thanks everyone, good to open up about this stuff

 

[crohnsappleadams]

My gastro guy is Dr. Travis Dierenfeldt

Not familiar with him, so I'm guessing you're not in the Wichita area.

Just a quick question.....do you feel like some people tell you to eat one thing and others tell you the exact opposite?
I guess it is a trial and error for everyone at the first go around.

Yep. People will offer advice based on what works for them and present it as if it were indisputable scientific evidence that their diet is the only diet for any Crohn's sufferer (not everybody is like this, but a lot of people are). Bowel disease is like a snowflake--no two are alike. It's all trial and error, and you may discover after you've been stabilized medicinally that you don't need to restrict your diet very much at all.

What do you think about Humara and do you know any cheap ways to get it if your insurance doesn't really help out with injection meds?

The company that makes it has one of the best patient assistance programs I've seen. Talk to your doc. Chances are he's familiar with it.

Also, I am feeling kinda bad for the amount of pain meds I am taking right now for the abdominal pain......anyone else go through that in the beginning?

Yep. It's good that you have a healthy intellectual perspective on the subject, but don't let that lead you to live in pain. What pain meds are you on?

Lastly, after you get things right again and are watching what you eat.....does life kinda get back to normal?

It varies for everyone. I was diagnosed a little over 12 years ago, and I'd say for probably nine or ten of those years I have lived a better life than I did before I was diagnosed. Presently I'm recovering from surgery (I had an intestinal resection because I was developing a significant blockage), so my life is far from normal right now, but I actually have hope of having a better quality of life again, which is more than I ever had before I was diagnosed. I really thought I was gonna be sick forever.

Some people don't bounce back as well though, so just be prepared to roll with the punches. Don't be surprised if it takes a year or two to really see any noticeable change either. It takes the docs some time to find the right combination of medicines, and if you read through some of the medicine threads on here you'll see that all of us are on something a little different. Just be patient and it'll work itself out eventually.

 

[kello82]

hey kansas and welcome.
yup agree with much of what crohnsapple had to say regarding all your questions.

like he mentioned, diet stuff for crohnies is truly a trial and error process. and YES you will hear so much conflicting info about it you will wanna poke someones eye out.
some of us can tolerate popcorn for example, and one kernel would send some of us to the hospital.
you really have to play around with it and eliminate and reintroduce foods to see what is a trigger for you. this is really hard to do when youre sick, i know cause you just need to eat! but maybe it will help in the end.
sometimes keeping a food jounal can be key. write down what you ate and how you feel. ive even kept track of my bms for periods of time. like "10:00 pm. in bathroom for 20 mins. diharrea and cramping. ow. kill me" "2:00 am. 5 mins. not so bad"
then youll see that you had a salad for lunch and that was the cause of your feeling like you were crapping bricks.
make sense?

as far as the pain meds, there definitly is a balance you have to find. its imprtant not to take TOO much, but also prolonged pain can really inhibit healing, appetite, even cause your seratonin to drop and be a factor in depression. i speak from experience here, as i had surgery 3 months ago and complications led to crohnic pain for me, the first time in my life being on pain meds. at first i felt guilty too, like i should just buck up and get through it. but theres no shame in getting relief. if your pain becomes more long term, theres better drugs than percocet for that type of pain. thats what i have been on for months, and just yesterday switched to a patch type narcotic. it gives a much steadier pain relief insted of spikes and lows. still waiting to see how it works for me, the dosage takes some finagling.
getting to see a pain management doc might be a good idea if its something you struggle with often or are taking a lot of percs. how much do you take usually?

youve come to an awesome place to meet other crohns people and everyone here is so warm and loves to help. keep asking questions were here for ya!

 

[crohnsappleadams]

+1 on the food journal. It will help you identify problem foods, and it will keep you accountable about how much crap you're shoveling down your gullet. I'm preparing to go back to one next week when I return to work, just to redevelop some healthy habits.

 

[kansas]

Thanks for the replies guys. Taking about 1 percocet every 6 hours. Good idea about the food journal. Right now just sticking to the most boring stuff out there....white rice with nothing, English muffin dry, eggs scrambled, no dairy, no butter, potatoes, chicken and soy protein drink. All of which are still tearing me up all day long. Anyway I see the GI today for the new plan of attack which hopefully gets me going in the right direction. See ya

 

[crohnsappleadams]

Thanks for the replies guys. Taking about 1 percocet every 6 hours. Good idea about the food journal. Right now just sticking to the most boring stuff out there....white rice with nothing, English muffin dry, eggs scrambled, no dairy, no butter, potatoes, chicken and soy protein drink. All of which are still tearing me up all day long. Anyway I see the GI today for the new plan of attack which hopefully gets me going in the right direction. See ya

When you get to wanting to try some slightly richer foods, consider apple butter for your English muffins. It's smoother than jelly and less likely to have seeds.