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Crohn's Disease
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Posted 1/22/2010 2:04 AM (GMT 0)

Hi there all,

I was DX in feb 2008 and have been on a rollercoaster since. Hospitalized in jan 08 with what was thought to  be an intestinal infection.  Re-hospitalized in Feb08 with C-Diff and was confirmed DX with capsule endoscopy of Crohns in the small bowel.  Put on 4000mg Pentasa, Prednisone for multiple flares throughout 2008, started Remicade every 8 weeks at nl dose starting in April, didn't do much, so increased dose to 7.5mg/kg, then increased to every 6 weeks. Was hospitalized in Feb 09 due to Asthma Exacerbation due to decreased Immune system meds.  In July 09 hospitalized for Crohn flare, obvious to us Remicade wasn't working,  changed to Humira.  The nightmare of pre-approval began and finally in the beginning of oct09 had the first dose of Humira.  A week later, 0ct 09 ended up in the hosp again for 12 days with a flare.  Now the company i have the insurance through changed from UHC to Anthem at the beginning of the year.  got my ID card 2 days ago, was supposed to have my last dose of Humira last friday, called Bioplus to get the ball rolling and now have to wait for the insurance company to do their thing and approve it so it can get to me.  Meanwhile, back on prednisone, 40mg a day for a week then decreasing by 10mg weekly till done.  On pentasa 4000mg a day still, Zegerid twice daily, other meds for other things.  have lost 30lbs since this all started, pretty good I feel, but 20lbs since octobers hospitalization.  Cant hardly eat, drink fluids mostly,clear.  feel so full after eating just a little bit that I don't eat much at all.  I am a single mom of 2 at home, thank god for Long Term Disability or we'd be on the street.  I'm gonna have to start paying COBRA again soon and between that and meds it will cost almost $800. that doesn't even pay for dr appts.  Does anyone find that their potassium levels drop drastically with a flare?  I've been having  horrible times with that.  I also get extremely pale about 2-3 weeks before I end up in the hospital.  Any thoughts on any of this would help.  I've been trying to get back to work since dec08 and am getting very discouraged and wondering if I should just throw in the towel.  Let me know your honest thoughts please....honesty is the best and only policy.  Thanks so much!!!!  And HI again

Posted 1/22/2010 5:50 AM (GMT 0)
What does your doc say about the drop in potassium? As I recall, when I was on pred. the doc told me to take potassium supplements. That was years ago, but you might ask him. Like you, I was a single mom and raising a severely handicapped son when I had my first huge flare. I had been having symptoms for 7 years. The flare that caused my first resection occurred a year after I was diagnosed. At times I asked myself how I was going to do it, but I learned that I needed rest whenever I could get it. Social life was out and I didn't have the energy for it anyway. I tried to plan the weekends around getting the errands and housework done and the rest of the weekend belonged to me and my son. When he napped, I napped. I had some close friends and they were great, but no one talked about Crohn's in 1978. I had a pretty stressful job as a multi-departmental manager in an insurance company. I think the illness made me even more determined to get on with life. There have been ups and downs over the years, but I raised one very special kid, so it's ok. Please hang in there.
Posted 1/22/2010 6:44 AM (GMT 0)
blush I just read your post. I've had crohn's since 1970. 3 resection surgeries. I was a horse jockey for 18 years with this piece of crap disease. right now I work 2 jobs I'm a blackjack dealer and I'm an artist, need the bj work for insurance, my art for extra money and sanity. My crohn's has been really good since I started eating papaya(fresh only) and entocort. I have an on going medical so I can call in sick at casino up to 84 days a year without getting fired. but for the past year my crohns has started in my mouth so I get flares in my mouth and on my tongue. pred helps but scares the crap out of me. don't want moon face. try eating papaya it's a natural digestive enzyme

                                                            artist guy

Posted 1/22/2010 8:40 AM (GMT 0)
Hi and Welcome to Healing Well. Sorry you have been having trouble this disease is sometimes
like a rollercoaster for us.
Posted 1/22/2010 2:47 PM (GMT 0)
Hi Crohnniedoe and welcome to Healingwell. Have you had any tests ran to see if you might have a stricture or narrowing going on? As your symptoms sound alot like what I was going thru when I had one. I hope they get you back on your Humira soon, and they get you feeling better.

Big Hugs,
Gail*Nanners*
Posted 1/22/2010 6:35 PM (GMT 0)
thanks so much everyone!!! Had my labs drawn yesterday to see if I'm low on Potassium. I try to handle it the old fashioned way...bananas, dark leafy greens, potatoes, but my body sometimes won't tolerate. I also cant take supplements because my intestines don't process them. I just read someones post on electrolyte drinks....don't know why I didn't think of that earlier, will try that too. They've done scans and ultrasounds when I was in the hospital. I think part of my problem is when I flare I constrict. I actually feel it in my upper abd. I can actually feel the hardening by palpating my abd, but it eventually releases and feels better. I think I'm justgoing to have to eat 3 very small meals a day and baby my belly, which never works as I have always been a emotional eater. AAAhhhhh the challenges of Crohns disease.
I heard from Bio-plus this morning, they are not a provider for the insurance I have, so they gave me the number of the company that is, I called them right away. Bio-plus is sending all the info over to them including the discount program I'm part of for help with the copay. Sabrina said Ishould hear from them in 3-4 business days about my shipment. Hopefully I'll only be about 2 weeks behind. Keep your fingers crossed.
In the meantime, I'm reading a lot here on this site and enjoying seeing that I'm not alone in what I'm experiencing. It's reassuring that I'm not so serious that it's hopeless.
You guys are all a Godsend and I hope you all know that!!!
A little more info about me is I'm 45 years old, was diagnosed at 43. I'm a nurse and have been for 15 years.
Thanks for everything,
Crohnniedoe:)
Posted 1/22/2010 6:40 PM (GMT 0)
Crohnniedoe I might recommend that you eat 6 small meals each day. That was what was recommended to me instead of 3 large meals a day. I find I feel better if I eat a little bit every few hours. I also live on a low residue diet. Easy to chew, easy to digest. You might want to google that and get some diet ideas. I am currently in remission, but still stay with the low residue diet as it is what agrees with me the most. Good luck!
Posted 1/22/2010 8:19 PM (GMT 0)
Hello crohniedoe

Welcome to the forums. :)

I noticed that you mentioned Long Term Disability, LTD, and Cobra. I wanted to give you the name of a great forum I like to go to. As I am sure you already know, it is hard to find information about LTD coverage. If you visit this forum, I suggest you just read the posts, at least for a while, the moderators are rather uptight, and picky about things, they sorta have to be that way. If it were not for this forum, I doubt I would still be on claim, that is how much it has helped me.

It is called www.disabilityinsuranceforums.com or www.diforums.com

Check out the claims advice section, there is some really good information available.

Good Luck
Posted 1/27/2010 7:02 PM (GMT 0)
Welcome to you..i too take potassium liqued..my taking pred is to blame for the most part of lack of potassium naturally.....glad you found us..stay with us n get to know hw and the great support from ppl here as well as info...lyn
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