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Ulcerative Colitis
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Posted 6/22/2011 4:54 PM (GMT 0)
Hello,

I'm a 19 year old female and was just diagnosed with UC about a week ago. I started getting sick with diarrhea and bloody stool but thought nothing of it because I had C.diff a year ago and was recently told I had an anal fissure. When the loose stool persisted, I went to my doctor and he put me on Flagil thinking it was the C.diff as well. After 5 days on Flagil with no positive changes, I went back. By this time, the stomach cramps started. The doc gave me meds for the cramps and sent me to have a CAT scan to make sure it wasn't my appendix. The scan showed an inflamed colon and a normal appendix, so he sent me home to try the Flagil a few more days. I should note, I don't have any insurance so the doctor was trying home care as long as he could to cut costs. The next day, I started vomiting. I couldn't even keep water down! After two days of that, we called the doctor and had me admitted to the hospital. I was there a total of 9 days. It took 5 days before they did a scope and told me I had UC. Now I'm on all theses pills and am told I will have to have Remicade every two months indefinitely. One problem is, without insurance, I haven't been able to receive my first dose.

Basically, I am completely overwhelmed. My dad is trying to take the front of everything so I can just focus on healing, but I feel like I should be doing more. What should I expect in the next few months? When will I be able to start seeing my friends and having somewhat of a normal summer? And I'm really worried about going back to college this fall because I go to school out of state. My current GI doctor said he'll set me up with someone near my campus, but I'm worried about dealing with flair ups so far away from my primary doctors and family. I'm also worried about dealing with my roommates and friends about this new disease and why I may become anti social.

Any words of advice and encouragement would greatly help!
Posted 6/22/2011 5:09 PM (GMT 0)
tink: I can't say for sure but it seems you're being rushed through the normal procedure. Usually people don't start with Remicade, I was very sick and I took Asacol and I was able to get back to nearly normal in just a few weeks. Of course, I don't know the condition of your colon or where the inflammation is the most severe or whether it is very severe so it is hard to judge what is the right course of action. Without insurance it is really tough. You're so young and I am so sorry you're going through this. I was in your shoes when I was 28 and I was so confused and scared. I was uninsured, couldn't afford the hospital or a colonoscopy, couldn't afford medication or doctors appointments. I ended up doing a clinical trial to get a colonoscopy. Clinical trials are an option if you're uninsured and you can find some that are for medications that are already approved, just in different doses. http://clinicaltrials.gov/

Please look here for Remicade assistance:

http://www.centocoraccessone.com/pages/remicade/patientassist/intro.jsp

You can also see about getting free samples from your GI. maybe Asacol or Colazal would work miracles for you. Many of us use those oral drugs in conjunction with rectal meds, suppositories and enemas to get into remission.

Have you ever been on prednisone? It's an awful drug but it could get you out of a flare up almost overnight and if you can taper off without symptoms returning, you may be able to retain remission with Asacol or Lialda and avoid going straight to Remicade.

Can you get on your parents insurance or get insurance through your school?

Posted 6/22/2011 5:12 PM (GMT 0)
Hi tink,

I was diagnosed in March, so I'm no veteran but I thought I could help a little here until one of the long timers chime in :)

First of all, I am surprised that your doc has already suggested Remicade infusions to you. This tends to be a fairly advanced stage therapy after other medications have not proved successful. You would want to ask you doctors about trying these first:

Mesalamines: Both oral and rectal. I take asacol (2400mg) and a rectal mesalamine as well. The rectal has helped me a lot.

Steroid: If your flare is a debilitating which it sounds like it is, some GI's will start you on a course of steroids like Prednisone to give you some respite. The side effects tend to be a little rough but it got me out of my flare within a couple of days. Oh...and they are pretty cheap.

These medications were my starting point and I am under control right now and living my life normally.

Something that also helped me a ton was changing my diet. I stick to lean meats (lots of chicken and fish), lots of eggs, cooked veggies, and fruits that aren't overly fibrous (bananas!). But you will find that diets are very constitution specific and differ from person to person.

Hope you can hang out with your friends and live normally soon!
Posted 6/22/2011 5:31 PM (GMT 0)
When I asked my GI about the severity of my case, he said I was between a moderate and severe case. I did have one round of Remicade in the hospital. Now that I've been home, I've been put on Prednisone (4 pills once a day), Purinethol (2 once a day), and Azulfidine (4 pills twice a day). He wanted to put me on Asacol instead of Azulfidine, but that was going to be $700 for one month supply. He also said he will supply me with a free sample of two different enemas he wants me to use. From the way the office aid talked to me, it sounds like they want me on Remicade so I can get off Prednisone. I don't really understand the drugs and what they do yet, so I'm just following along with what he says.

My parents are divorced, I live with my dad and he was laid off three years ago and hasn't been able to find a job so he's uninsured as well. We are looking into state aid, but with my age and this is considered a preexisting condition, its not looking good. I'm still researching insurance through my college, but again, as a preexisting condition, it doesn't look like it would be worth the money.

Thank you for the links!
Posted 6/22/2011 6:25 PM (GMT 0)
You could try Lialda, I believe there was apost recently about their patient assistance program. I heard you can get it for next to nothing and it's very similar to Asacol. Ask your GI about that.  http://www.shire.com/shireplc/en/contactus/patientassistance

I don't know why they are assumming you will have trouble getting off prednisone, that doesn't happen to everyone. It happened to me but it's not common, especially if you're on 100mg of mercaptopurine and 4800mg ASA.

Did you notice any improvement from Remicade or Prednsione?
Posted 6/22/2011 9:26 PM (GMT 0)
I feel like I haven't been sick long enough to really know. I was so drugged up on pain medicine while in the hospital it's hard for me to remember what medicines they gave me that made me feel better. My dad said he noticed improvement after one of the medicated enemas, but I don't remember what it was called. Right now, I feel fine. No major symptoms. I get some gas pains after eating, but nothing that requires pain meds. I'm not regular with my bms yet, but they are solid for the first time in a month! Right now, I'm just very weak, tire easily, and don't have much endurance. Walking up the stairs is considered 'exercise' for me right now.

So it looks like they're on the right track?
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