Newbie here. UC is wearing me out. Just got diagnosed

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Scoop707

Scoop707

Joined
Oct 10, 2012
Messages
11
Ok, so I was just diagnosed with UC a couple of days ago after a night in the hospital. I'd been having 12-14 bowel movements a day for about 6 months and then all of a sudden they stopped and I hadn't had any for 3 days. My stomach was distended and cramping so they admitted me into the hospital and ran some tests. I was immediately put on steroids and Asacol HD 800mg. Unfortunately, I don't have insurance and can't afford the $411 cost of the Asacol. The Prednisone seems to be helping some and after 3 days, I've finally able to go to the bathroom again. I see the GI doc on the 18th for the first time. Any advice on the Asacol? I was told that I really need to take it but I can't afford it. I've called the manufacturer and they said all they can do is give me $50 off which still doesn't help me much.
 
Welcome to the forum!

I'm really sorry to hear about that. Any chance you could qualify for a medical card? It's a bit of a hassle, but if it can help you, it's worth it. Do you work, or does the UC make that impossible?
 
Thankfully, I have an understanding boss that just laughs when I have to go to the bathroom all of the time. :) I work full time although the frequent trips to the bathroom do make it difficult at times. I'm not sure what you mean as far as a medical card though? I'm meeting with someone today to apply for health insurance so hopefully that goes well.
 
A medical card is basically government issued health insurance, similar to welfare and food stamp programs. You're not eligible if you make so much (although I don't know what exactly the limitations are). It sounds unpleasant because people take advantage of it, but if you need it, then why not? My mom had one for me until I turned eighteen, and even though I was on my dad's insurance, it picked up anything that wasn't covered. It was a big help.

I found this link that might be helpful to you: http://www.okdhs.org/programsandservices/health/patasst/

If you're applying for health insurance though, that's probably your best route. Is it offered through your job?
 
Thank you for the link. I make almost $50,000 a year so I wouldn't qualify for state assistance. My job doesn't offer health insurance because under the law we are too small of a company and its not required. I should've had health insurance a long time ago but didn't think that what was happening to me was that serious.
 
You're welcome!

Medical insurance is always nice to have, but tends to seem unnecessary at times. I'm lucky that I was able to get back on my dad's insurance (I'm twenty, so I should still have that for a while) after he dropped me, or else I'd be in your situation, too.

I hope it all gets worked out smoothly! :)
 
Lol, pun definitely intended, huh? So, how long have you had this ungodly disease? How has your diet changed? How often do you have flare ups? What meds are you taking for it?
 
Haha!

I have Crohn's and was diagnosed December 6th of 2008 (about a month before I turned seventeen). I started feeling symptoms when I was about eight, but they were mild until I was around fifteen.

I don't eat salads and I limit sandwiches and such with a lot of vegetables on them, also. Basically, vegetables and hot wings are my triggers.

I'm not really sure on flare ups, because they're tricky to define. I never really went into remission and had bad stomach pains probably once a month between my diagnosis (more in the time I was on Prednisone, but I won't trash talk it if it's helping you! :) ) and when I lost medical insurance and stopped my medicine. About a year after that, it bumped up to once every two weeks, then eventually after a while it was every time I ate. In July of this year (a few months after I got my insurance back and got a referral to a GI) it apparently fixed itself - just in time for my pill cam to see only healthy intestines. My body is currently showing no evidence of Crohn's, and I'm only having mild fatigue and mild stomach pains.

I started out on Prednisone and 6-MP, then switched the 6-MP to methotrexate. Stayed on that until I lost my insurance, and now I'm taking Pentasa.

That's a lot of info! Sorry for hijacking your thread, haha!
 
I was originally diagnosed with Crohn's as well but the last doc I saw said it was UC. I've had a colonoscopy and a sigmoidoscopy a few years ago and had healthy intestines. About 6 months ago, I started having diarrhea about 12-14 times a day with occasional bloody stools. And then of course the normal stomach cramping and sometimes bloating. I never had any weight loss though. Of course, I eat like crazy and I really have no idea what my triggers are. I am also lactose intolerant. My mom has UC and my dad has Crohn's. He has had to undergo many surgeries because of it and has had to have some of his colon removed. I've heard some bad things about the Asacol HD so I'm not sure I even want to take it. My mom said the side effects are sometimes worse than the flare ups. I have a friend that is currently in ICU with Crohn's and he's not doing too well.

Don't worry about hijacking my thread, this is the first thread I've ever posted and I'm still trying to figure things out.

I appreciate you taking the time to talk to me.
 
Oh wow, you have a lot of experience with IBD, then! I'm sorry to hear about your friend. :( Are your parents doing well with it now?

As far as the medications and side effects go, I think it's one of those things you have to trust your doctor on. If it makes you feel worse, you can stop taking it and ask for something else. At least we have options! And so far you're pretty lucky, if Prednisone has helped you. It's a good thing to have on your side, haha.

I lost eight pounds in a month before I was diagnosed. Since I started out at 98 lbs, it was kind of scary. I had doctors threatening me with feeding tubes! Luckily, I gained it all back when they started me on the Pred. Since then, I've been gaining (even when I was feeling really bad earlier this year). I think part of it is because I was traumatized by the feeding tube thing, so my reaction to a flare is actually to eat more, whether or not I'm hungry and whether or not it hurts.

I know it's basic advice and really tedious, but a food journal might help you. I fought it for a while, but it's really helpful to know what foods are bad for you - so you can at least limit them when you know you're about to be in a situation with limited bathroom access.

You're welcome! It's always nice to converse with people who understand what you're going through! :)
 
My dad isn't coping well with it. He's had numerous complications to the surgery which has required more surgeries. Basically, anymore surgeries and it could kill him. He just turned 60.

As far as experience with IBD, I wouldn't go that far. I did a lot of research while I was in the hospital on Monday and Tuesday. Unfortunately, I never took the time to understand what people were going through. Mostly because I was t sure of I had it or not. Now, I see and feel the importance of it all.
 
Sorry, I dropped off there. I got busy at work.

Knowing you have it certainly does make you have a new outlook on things that's for sure.
 
Tough break on the diagnosis but you're in the right place.

Regarding the Asacol, I've heard of people getting it from Canadian or even India based pharmacies for substantially less. Might be worth looking into.
 
Sorry about your recent diagnosis. For me Asacol did help with the blood/frequency. I'm on 3200mg/day. Luckily in New Zealand its all funded. I didn't have bad side effects with Asacol, only feeling sick for the first week like I had a flu. Unfortunately, it hasn't been successful in completely dulling down the inflammation and like you, I'm now on Pred. If you could find a way to take it though- it helps. Good luck with your diagnosis- I'm glad you're feeling a bit better on steroids.
 
Hey there Scoop and welcome to the community :)

I'm curious what tests were performed that resulted in a Crohn's disease diagnosis and then what the last doctor saw that made him overrule that and go with UC. As your parents have UC and Crohn's, I'm sure you understand the importance of being sure it is UC and not Crohn's.

Again, welcome!
 
Well, the Crohn's diagnosis was based on a biopsy that was done during my last colonoscopy and blood tests. The UC was based on blood tests, an X-ray, and a sigmoidoscopy done by the ER doc where he found small bleeding ulcers. I'm scheduled to go see another GI on the 23rd where I'm sure he will want to do, yet, another test. Probably another biopsy. When I was diagnosed with Crohn's, I was never given any medications for it because at the time, I was having Gall Bladder problems and the biopsy was a spur of the moment decision made during the colonoscopy. I had my Gall Bladder removed and seemed just fine for about a year and a half. Now, everything seems to be going out of whack.

My Rx's are:
Asacol Hd 800mg - 3x daily
Prednisone 20mg - 2x daily
Norco - 5/325 - 1 every 4 hours as needed for pain
Prilosec 25mg - 2x daily
 
I'm glad you're seeing a GI on the 23rd. Frankly, I'd be more inclined to believe a biopsy of Crohn's than a UC determination by an ER doctor based upon those tests.

I'm guessing you will see some additional medication come the 23rd.

It terrible that you're having to suffer in the meantime :(
 
The constipation may very well be due to the Norco. It's a common side effect :(

The reason I say you may get more medications is if it is indeed Crohn's Disease, then the Asacol won't be enough and sooner or later (hopefully sooner) you'll be tapered off the prednisone.
 
In regards to the constipation, would it be ok for me to take a laxative or would that be frowned upon?
 
AckMac said:
Tough break on the diagnosis but you're in the right place.

Regarding the Asacol, I've heard of people getting it from Canadian or even India based pharmacies for substantially less. Might be worth looking into.
Click to expand...

Thanks for the info. I happen to have found a pharmacy based in Canada that sells the Asacol Hd 800mg for $120 for 90 pills and then, of course, there's a discount for the more you buy as well. I think that price is a lot better than the $411 I was quoted at Wal-Mart.
 
It's quite alright. I appreciate your honesty. I wish I knew what was going on with me. Just seems like since the trip to the hospital earlier this week and being put on the meds, which I'm not currently taking the Asacol Hd because it's too darned expensive, I've had these wierd things happening to my body that I really am not sure about. Like now, I have a migraine headache (I've never had one before), my upper abdomen is hurting and I still haven't had a bowel movement since Sunday. I've had the urge to go but just couldn't go. I was supposed to see a GI on the 18th but because he decided to schedule a meeting, after he made my appointment, it's been rescheduled to the 23rd. I just hate not knowing and the one thing I do know is that if I have to go back to the ER, they will probably admit me again and do nothing for me, except give me Dilaudid for the pain and IV steroids. What I'm not quite understanding is how can an x-ray show no blockages if I haven't gone to the bathroom in so long?

Sorry for rambling :)
 

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