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Regular Member

Date Joined Nov 2007
Total Posts : 36
   Posted 11/7/2007 7:55 PM (GMT -7)   
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...

New Member

Date Joined Nov 2007
Total Posts : 6
   Posted 11/7/2007 8:05 PM (GMT -7)   
Welcome Dom, I'm fairly new here too.  I can't help you much with the Humira thing, but as far as the constipation issue....  I have the same problem if I'm NOT having D..I don't realize I have to go until it's right at the last minute, and then I can barely walk to the bathroom.  I have a really high tolerance for pain, as I'm sure you do too with all you've been through.  For me, the pain I feel I think is caused by a couple of things.  1.  I'm not used to the feeling of a normal BM, so don't know what it feels like before it happens---and it probably doesn't hurt like normal CD cramping.  2.  I'm always a teeny bit in pain, so it's hard to notice til it knocks me over.
I usually know now a days though, because I will get really really bloated, but not have any of my normal cramping.  Then I know I'm going to have a normal BM eventually lol.
If someone else has a more scientific explanation than that, I would be open to any new insights as well. :-)
Diagnosed with CD in '89
2 resections, B12 anemia, blood transfusion
Medication: Pentasa

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 11/7/2007 8:17 PM (GMT -7)   
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.


Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 11/8/2007 4:40 AM (GMT -7)   
Hi Just wanted to add my welcome you will find lots of help here and info . I do not have the big pain thing going on but do find it is better to go as sooon as I get the urge. Have you tried sitting on the toilet at a certain time to see if that helps? So howlong before you move I hope you find another amazing DR. It helps if we like our GI's that's for sure. Mine is pretty great to . lol gail

Regular Member

Date Joined Nov 2007
Total Posts : 36
   Posted 11/8/2007 5:18 AM (GMT -7)   
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.
You can call me Dom. :)

Veteran Member

Date Joined Feb 2007
Total Posts : 1010
   Posted 11/8/2007 6:53 AM (GMT -7)   
Sounds to me like the pain from strictures. Before my first resection I lived for many years with a severe stricture in the terminal ileum. Most of the time I wasn't in remission and had mostly unformed movements. Lots of misery, but not a lot of pain (except during the frequent obstructive episodes).

It was during the periods of remission -- when I was on a high enough dose of steroids to really quiet the inflammation, that i experienced the kind of pain you are describing -- always associated with formed bowel movements.

Usually two or three horrendous, gripping, double-you-over and make-you-want-to-vomit cramps and then an urgent need to get to the washroom.

That was 20 years ago and I still remember the circumstances surrounding some of those episodes.

Since I'm not from the States I can only sympathize with the position you find yourself in regarding meds. maybe you should discuss this with your PCP and GI and see whether there are any subsidy options.

30+ years living with Crohn's.

Regular Member

Date Joined Nov 2007
Total Posts : 36
   Posted 11/8/2007 7:13 AM (GMT -7)   
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.
You can call me Dom. :)

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 11/8/2007 7:51 AM (GMT -7)   
Hi! Didn't have time to read all the responses but I just wanted to welcome you. I too have pains even when I'm in remission. Its more like I still have to urgently go even if it is a "normal" bowel movement and if I don't get to go urgently Im in a lot of pain. I hear where you are coming from with the Humira co pay. Luckily I have not had to try such strong drugs. However, if you found a way to get the money reimbursed that is huge!! How long would it take you to be reimbursed? If its only a month or two I'd recommend getting a credit card and putting your co-pay on that and as soon as you get reimbursed paying off the credit card. Credit cards are great for when you have to front the money for medical stuff.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 11/8/2007 9:37 AM (GMT -7)   

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! 



Regular Member

Date Joined Jun 2006
Total Posts : 267
   Posted 11/8/2007 1:19 PM (GMT -7)   
Dom, welcome! I know that the drug company that makes Humira (go to does offer free meds to people that qualify. Before my insurance company approved my Humira I had called them and talked to a Humira rep. about it. It's definately worth checking out, the woman I spoke with was really nice and very helpful, they even helped me to get my ins. company to approve the treatment. I have been on Humira for 2 months now and it has worked great for me, I had diarrhea at least a dozen x a day and it's down to 3 or 4 x a day now. I have much more energy, much less pain. It's been a Godsend to me. Best of luck to you!
Marci, 38 years old, Rockledge, FL
Dx with Crohn's disease March 2006, currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor, plus 3x per day heavy iron supplements for anemia

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 11/8/2007 1:24 PM (GMT -7)   
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!


Regular Member

Date Joined Nov 2007
Total Posts : 36
   Posted 11/8/2007 5:08 PM (GMT -7)   
Actually my old boss was very understanding because her son has Crohn's as well. Of course I didn't tell anyone I had Crohn's until I was hospitalized but then found out she was knowledgeable about it and understood.
This is a new job which actually I don't even technically have yet. I'm not about to start taking time off already. I don't know about anyone else but I'm the only one supporting me. No parents, no husband, no nothing. I do it all myself, a little bit of work missed is a lot when you are trying to make it financially.
I also am not eligible for a credit card, divorce left my credit in the dumps. So that won't work.
There is also a lot of other things, I am trying to get custody of two of my siblings, which is why I'm planning to move across the country. So money is tight needless to say.
Cutting the stress out of my life isn't easy, which is why I tried to help myself by controlling the only stress I could... my job. That is why I'm looking for a new job and currently out of work. Only for this past week have I been unemployed but literally waiting for a call right now to see if I have the job I'm applying for.
I'm doing the best I can.

You can call me Dom. :)

Regular Member

Date Joined Oct 2007
Total Posts : 106
   Posted 11/8/2007 5:28 PM (GMT -7)   
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!
DX: Crohns in March 2007
Meds: Remicade

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