New here and in need of information

Hello everyone, I'm new to these message boards but definitely not new to Crohn's. I was diagnosed finally in 2002. I was in and out of hospitals all throughout 2001 into 2002 and I heard everything from ulcers to flu to psychosematic illness. I had doctors telling me I was just depressed and nothing was wrong. Finally I got so sick that the ER knew not what was wrong with me but only that if they sent me home I would have probably died that night. I had severe diarrhea and projectile vomiting for weeks. I couldn't keep anything down period. I had lost 60lbs (never said it wasn't the perfect diet plan) in less than 3 months. I was admitted to the hospital and stayed for 1 month, multiple testing, blood transfusions, scopes, etc. Finally the diagnoses of Crohn's came. I've been on tons of medications. Asacol gave me the worst side effects, Imuran made my hair fall out (being 22 at the time that was not a big self esteem boost). I'm on Pentasa now taking 4000mg daily, I'm finally off prednisone for the time being. I have to get vitamin injections but can't take multi vitamins because I have too much zinc.

Okay, that brings me to my current situation. I will be seeing my Gastroenterologist on the 13th and he is really wanting me to go on Humira, he says that my 1 to 2 hospital stays per year is way too many and he thinks Humira is my last resort before surgery. The only problem is that my insurance only covers $1100.00 of the drug and the copay is $500 twice a month. I can not afford that! I've looked into help with it but the only place I found will pay back the $500 AFTER I pay it first. That's the problem, getting the money first.

Also I'm planning on moving (my doctor doesn't know this yet), but it will be across the country and I'm nervous about finding a new doctor. I stuck with the doctor that diagnosed me and I love him to death, he's amazing.

Anyway, I've seen random postings about Humira and people mention other drugs but haven't read too much into all the posts yet. Was just hoping others had some advice.

And to be totally open and honest (since everyone here is probably okay with it) I was wondering if anyone else has the following symptoms with their Crohn's. My doctor can't figure out why I have this and was just wondering if I'm alone... When I'm actually in remission and I have a normal bowel movement I don't even know I have to go to the bathroom until I have extreme abdominal pains and then I know I MUST get to the bathroom asap and usually I have a bowel movement at that time. The pain is so intense I'm doubled over but there is no explanation for it. Anyone else have this experience or am I nuts?

Thanks for any help...

-Dom-

Interesting. Have you discussed Remicade first? That one isn't cheap either, but its been around a few years longer than Humira, maybe your insurance might cut you some slack on its co-pay..
Oh, BTW Welcome to HealingWell, I hope you find the site as useful as we have found it.

Sincerely,
Matthew

Thank you for all the replies. I am going to reply to all of them in one post (hope that's alright).

Thank you all for the welcome, that was kind.

As far as Remicade, yes my doctor did bring that up, it would be easier as far as money goes due to it being considered a hospital visit. I know the initial copay would be $100 but I don't know how much the insurance would pay after that. My only issue with that is I'm a dedicated worker, work myself straight into the hospital every time. And I'm getting a new job right now (due to the overwhelming stress at my last job) and I can't take off to go to the hospital for a Remicade treatment, that is another reason why he thinks Humira would be best because I can do it myself and wouldn't have to miss work.

I just ended my job as a group home supervisor, but can work there whenever I want to help out or train. I am now going to be a preschool teacher. So I can't put the kids on hold to go to the doctor's.

I know I'm supposed to take care of myself, and I do that to the best of my ability, hence quitting my last position. But, I'm the only one I have to take care of me, my bills, my health, and my future. No one helps me, so taking off work is not an option there.

I've tried sitting on the toilet and "trying" to go without forcing myself, it never works. I do agree with the bloated statement though, I tend to get bloated quite often. My abdomin swells alot, my intestines are pretty much always enlarged to a certain extent.

My last colonoscopy was a little scary because they removed hundreds of polyps (sp?) and had to do biopsies, all were benign but the doctor did say there were so many he couldn't get them all. So, I will have to have regular scopes to do further biopsies and hopefully clear out the polyps completely? Wishful thinking probably.

I swear I can feel everything solid that goes through my intestines, as weird as that may sound. I've become so in tune with my body as far as the Crohn's, pain, food, meds, illness, etc. The only thing I can't seem to get a grasp on is the one pain I described.

I probably went above and beyond in this post and for that I apologize. Thanks for taking time to respond Gail, Matthew, and CD89 and for the warm welcome.

 

Oh you described the pain perfectly! But wouldn't the doctor be able to find the stricture during a scope?

Oh goodness, that makes me nervous now... I just want the pain to go away. I can deal with the every day pain, even the every day symptoms and having to watch everything I take in... but that pain is unbearable!

It's my biggest complaint at this time.

It's definitely not a pain you forget so I understand you remembering it after 20 years. Oh I'm so sorry.

My doctor thinks I've had this for long before 2002 but it went undiagnosed because no one did the right testing, they just played it off to be in my head or ulcers... Wish I could go back and tell them how wrong they were.

Thanks for the reply.

Welcome to HW! 

I am a teacher also, and I take remicade.  I can do mine as late as 2:00, so you would only need a sub for a little bit.  I don't see why that wold be a problem.  And after your first three infusions, you only go every 8 weeks usually, so that's not a big deal.  If your employer can't be understanding with you having to miss a couple of hours every 8 weeks, then that is no place that I would want to work! 

Well, being dedicated & being a Martyr are not quite the same thing! Firstly, stop putting off stuff until you are so sick you need to be hospitalized! Yeah, I know this is hard for a lot of us, still what use is being dedicated if you get yourself bedridden? Employers don't actually appreciate this in reality...
Anyway, I'd rather take a day off for a needed proceedure than wait on one I know I'll never be able to afford. Just my opinions of course..
I hope everything turns out allright for you!

Sincerely,
Matthew

Hey Dom, I am relatively new to crohns, I got diagnosed back in March but have had symptoms my whole life. I have the same troubles that you are having and everytime I go to the ER they tell me nothing is wrong with me. I am in pain a lot of the time, but I can handle just the cramps...But right before I have a bowel movement I have the same problem you do. I bow over in the floor in tears, the other day I went to a doctors appt. with my aunt and someone was in the restroom and I swear I about went on myself. This disease is so horrible and unpredictable I never know what to expect anymore. My doctor always tells me I seem to be doing fine, eventhough I am telling him otherwise. I make atleast one trip to the emergency room a month because my pain gets so bad sometimes its hard for me to handle. I was thinking that I might have a stricture too, but everytime they do a CT on me all they can find is my diseased section and a few ovarian cysts. I'm tired of dealing with this and I wish someone would listen to me. I'm so sorry that you have to gos through all of this, but atleast you have a good doctor. Mine is a butt head! I'm in the process of finding a new one right now, so that I can get straightened out. You might want to ask you doctor about Remicade, I live in Kentucky and that's what I am on right now. I think its about 850.00 every injection but I just have a 10 dollar copay. What kind of insurance do you have is through work or your state? Remicade has helped me some, so I would look into your other options. I know how you feel about the money, its hard for me just to keep up on my medicines because I have to pay full price for them. Don't worry about it though, surely they will get you on some kind of medicine where you wont have to pay an arm and a leg. Good luck to you and welcome to HW!