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Ulcerative Colitis
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Posted 4/9/2015 8:21 AM (GMT 0)
Seriously how do I do this?
Got diagnosed about 2 months ago and went undiagnosed with serious pain and bleeding for almost 2 years.
I mean it's nice to know what's finally wrong with me but now that I have it forever, have to constantly struggle with it and contain it. Not to mention it's EXPENSIVE.
The procedures and the medication have put me under and I'm barely starting my life.

Struggling so bad with my anxiety and depression. It's really pushing me over. Can't sleep a full night with out getting up to use the bathroom and when I get there God knows how long I'll be there. Always 2nd guessing what I do and what I eat. It never ends.

I'm not the only one that feels like this, am I?

Ps: first post. Struggling so went to the experts for some support. ❤️
Posted 4/9/2015 8:48 AM (GMT 0)
Wow, thats a long time before diagnosis. Have you been prescribed some good drugs? I'm guessing some anti-inflammatories. Oral, rectal, both? Asacol? Pentasa? Take them! Then Google the sh-t out of the disease and get yourself on an even footing. There's a lot to learn. Take one day at a time. There are plenty of us out there dealing with the same or similar. You've come to the right forum.
Posted 4/9/2015 10:23 AM (GMT 0)
Haven't been able to start a prescription yet. No money for the medication. All the meds are $150+ A month, even with insurance. Time for medical. Working on it, ulcerative proctitis and it sucks 👍🏻

I'm excited to talk to some people who have some idea and are going through the same thing
Thank you!
Posted 4/9/2015 10:39 AM (GMT 0)
You aren't the only one who feels like that, but it will get better once you can get your symptoms more under control.

What medications are you on? Do you have insurance? It's pretty much a must have with this disease in the U.S. -- between the tests, dr visits and drugs there's no way most people can pay for the treatment needed without insurance. Some of the medications have patient assistance programs to help with the costs.

There's so much to learn about this disease and most of what I have learned wasn't from my doctor. You will need to do your own research and learn all that you can. This site is a good place to find information. One thing to be aware of as you read things here and elsewhere -- this is a very individual disease. What drug/diet/treatment works from one person may not work for the next. You WILL find the right combination, but it may take time. Patience is essential (it's the hardest thing for me) because improvement can take time.

Hang in there! As you start feeling better physically, your outlook on life will look much brighter.
Posted 4/9/2015 10:44 AM (GMT 0)
Check to see if there is any patient assistance for the drugs you were prescribed. Check to see if you can get samples from your doctor. I have also heard that some meds are less expensive in Canada and there are some here who get their meds from Canada. I have never done that, but if you do a search you should be able to find out how to do it. The sooner you can start treatment, the sooner you will start to feel better

Best wishes!!
Posted 4/9/2015 12:35 PM (GMT 0)
I am so sorry you got this but it's a good thing you got a dx. You have to get on meds. What about Obama care. Are you in school? If parents have med ins and u are in school I think you are covered. Ask doctor about samples. Why they didn't give you any is beyond me. Find a dr with samples!!!

Anyone in your family have it? Try modifying your diet to help, use low residue.

Keep reading and posting it will help in so many way!

Try nopal, people having good results and it's cheap !

To answer your question: one day at a time and find support group, like here or therapy. Go to www.meditationoasis.com and try to relax when crap hits the fan! 😱😱😱
Posted 4/9/2015 12:36 PM (GMT 0)
A ulcerative colitis diagnosis is an incredible head-trip. Most of us were diagnosed young, and had no health issues prior to this. Depression and anxiety go hand-in-hand with uc. Many here struggle with it, some are able to handle it on their own, some see psychologists, some are on antidepressants.

Getting your uc under control will help considerably. Ask for a prescription of Sulfasalazine, it's a generic medication for uc that costs less than $100 a month without insurance. Most insurance policies cover generics.
Posted 4/9/2015 12:54 PM (GMT 0)
Welcome to the forum. Sorry to hear about your condition and hope you get better.

For me, I try to focus on 2 things:

1) focus on the positives - It could be a lot worse. This is a bad condition, but there are many worse diseases that other people suffer with. You could be stuck in a wheelchair, immobile, missing a limb, in a lot more pain, etc.

2) find the best doctors and treatments - everyone's body is different and there isn't a single set of drugs/treatment plans that will help everyone. But often there is a combination that will work for you, so keep looking and trying. Remission is possible.
Posted 4/9/2015 1:17 PM (GMT 0)
Make sure you check out the patient assistance websites for the drugs you have been prescribed. Most of them will reduce your payment to a very manageable level. If you don't have insurance, you can often apply for free meds. For example, Lialda has a process to get free meds if you are without insurance--http://www.shire.com/shireplc/en/patient-support

Also, google the SCD diet. It's a good place to start when trying to control your symptoms through diet. It's tough but it has helped a lot of people.
Posted 4/9/2015 1:18 PM (GMT 0)
I'm not an expert but I've been diagnosed for 3 years and had symptoms leading up to it for about 4 months (I'm 24). I'm from the UK so I'm not quite sure how the medication process works in the US so I would research into it personally.

I know how it feels but trust me it will get better, within the first year I felt a lot like you and got down and felt like I was depressed, my weight went down from 75kg (I used to exercise a lot and play football etc) to 65kg as I couldn't do the things I could before as well as constant bowel motions that were making life hell. about a year in I decided to get back into my old routine of staying active and I can't say enough of how glad I am I did that. As well as given my a physical boost, mentally I felt better than I ever did within the first year. I've bought my weight back up to 80kg and am probably healthier than before since I avoid sugary and fatty foods and try to eat as healthy as I can and I'm back at the gym and playing sport for the last 2 years. Just don't let yourself get into a rut for as long as I did (I know it sounds easier said than done) and know that things will get easier, just do the right things.

Currently I'm on 150mg Azathioprine and 2g Pentasa sachets daily. Hope I helpped a little.

Post Edited (IusedToLikeJam) : 4/9/2015 7:22:36 AM (GMT-6)

Posted 4/9/2015 1:23 PM (GMT 0)
What does "time for medical" mean? Does that mean you don't have insurance now? You may not be able to get it now until next year if you don't already have it. There are cheaper options for meds. If you do have insurance the patient assistance cards offered by these expensive drugs can reduce your copay down to $25.
Posted 4/9/2015 3:53 PM (GMT 0)
I remember when I first got sick how confused and terrified I was, I just couldn't wrap my head around how stupid my bowels were behaving and it never dawned on me that I had some disease and would be that way for what feels like forever (doesn't help that I didn't ever respond well to meds and had a pretty intense flare which ended lasting for 23 years either) and I got DX fairly quickly compared to most people on the board but due to being either allergic or non-responsive to the oral meds it's no wonder I flared for so long.

We all understand how overwhelming having an IBD is so you've found a great place for support, at the same time it's a devastating feeling knowing you've got something that is life long/chronic but thankfully most respond very well to all meds and can live very normal and happy lives.
Posted 4/9/2015 4:43 PM (GMT 0)
Hey, Colitiscucumber2.

I just want to offer encouragment. You mention you're just starting off in life and this is a life-long concern. I've been right where you are now and have lived to tell about the experience. I was diagnosed with Type 1 (juvenile) Diabetes when I was 21 and immediately had to learn how to give myself shots, check my bloodsugar, moderate my diet and exercise and downtime and sleep habits and, well ..., everything in my life changed in an instant. I was terrified and completely and utterly pissed-off!!! It took a whole lot of reading and questioning and there was a bit of rebellion mixed in there also, before I adjusted and realized that while this aspect of my life may suck royally, LIFE IS AMAZING!!! Every day is new and there's always an adventure to be had.

With 25yrs of Type1 Diabetes under my belt and a brand new UC diagnosis, I find I'm learning all over again. I am frustrated again. Don't let it keep you down, though! It is just so cliche an answer and also sounds so condescending, but you really must remind yourself every day that you've got another day. Hoorah, You! Don't waste it. Enjoy it to whatever extent you're able. You'll learn and grow, over time, and will find your balance again soon enough. Based on my own experience, I'm willing to make that a promise.

Given your challenges in finding medical care and Rx's, would others agree that a stop-gap could be Nopal water and/or turmeric tea and/or C3 curcumin? Maybe these things could help get the symptoms under control?
Posted 4/9/2015 7:22 PM (GMT 0)
Thank you all for the ideas. I have insurance but it's crapty and literally covers 10$ of any medication I've tried to get.

I hope this does get better. I'm getting over the hump right now and I'm excited about this forum.
Posted 4/9/2015 7:28 PM (GMT 0)
Hey, CC, welcome.

There are generic medications for UC that your insurance company should cover in full. If not, then you will need to change insurance companies at the next possible moment. Are you on your parent's plan? Is there an option at your school? Have you checked the ACA exchanges?

If you are waking at night it might be a good time to get some prednisone to induce remission. This is a very effective drug and extremely cheap - not meant for long-term use but it will definitely help you feel better fast.

Great suggestions above about asking for samples or getting assistance from the drug companies.
Posted 4/10/2015 12:29 AM (GMT 0)
I'm going to start putting in applications to get on Apriso or something.
Posted 4/10/2015 2:11 PM (GMT 0)
Once you get your symptoms under control, having it forever won't seem so bad. I forget I have it sometimes.

Expensive meds are tough but with doctor visits and colonoscopies and stuff talk to your doctor about payment plans. Medical expenses are the #1 cause of debt in the US and that's partly due to the fact that most people don't know that doctors will work with you. People think we'll I can't afford the minimum payment so I just won't pay it. Then they get slammed with late fees costing them even more. Doctors understand. They're people too. And chances are they have had to go through student loans so they know how difficult it is. Talk to them.
Posted 4/10/2015 2:55 PM (GMT 0)
I was on uceris for months, samples only!
Posted 4/10/2015 5:53 PM (GMT 0)
I have an amazing doctor who works with me and talks to me about prices of meds and is willing to go through Canada for cheaper ones and what not
Posted 4/10/2015 6:09 PM (GMT 0)
Good deal!
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