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Ulcerative Colitis
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Posted 4/20/2013 1:13 AM (GMT 0)
So I don't post too much on here but I'm in need of a rant.

I have been flaring since February. This is the first bad flare I have had since last May, which I got under control with pred. This flare however, is a lot harder to get under control. I started entocort when I first started flaring (trying to avoid the negative side effects of pred), then tried Uceris. I was hoping that that was going to be my miracle drug, nope! I have been on it a month and have had zero improvement.
I started seeing a new GI in the town where I go to college and I like him much better. He sat with me for over an hour to discuss my disease. That has never been the case in the past two years Ive had UC. He upped my lialda dosage to 4 pills every morning, kept me on the Uceris because he thought i could worsen if i stopped it, and he started me on cortifoam enemas every night (for 10 nights, i'm on day 5). We talked about 6mp being my next step.

Despite these changes I have had no improvement! I woke up this morning as usual with awful cramping and purely bloody D. I am in college and rent a house with 4 other people and can not take it anymore. I'm tired, I'm stressed over school, and I'm far away from my family. My roommates don't understand that I get tired faster than them and sometimes I need quiet. I put on a brave face and act normal but it's hard. It is mentally exhausting planning my day around where I can go and how I'll feel and covering up that I don't feel well, just as much as the disease itself is tiring. I have finals coming up for school and just want this flare to be under control. I see my GI for a follow up on May 7th, yayyy right after finals are over. Perfect timing.

I just needed to rant to some people that understand. This forum has been a huuuge source of information and comfort to me in the past two years, and I am very thankful to all of you for that!
Posted 4/20/2013 2:06 AM (GMT 0)
Oh boy do I ever know about the stress and every day life of having Uc! First of all...take a deep breath. You are stressing yourself out and that is never a good thing with Uc.

Hey, I don't know if you knew this but I am THE queen of acting normal while I feel like I am dying on the inside. I try to be normal and enjoy myself, put on that smile, be the social butterfly but really I just want to hide in a corner, hold my gut and cry (not so much with my Uc nowadays - since I'm in remission - but I have other gut issues that still cause me issues). Ah the joys of having a hidden disease eh?

Ranting is always a good outlet and we are here for you anytime.
Posted 4/20/2013 6:00 AM (GMT 0)
I hear you on all that. It's hard to keep up the facade that you're okay when you feel like crap and don't want to have to explain why. I'm a teacher and it's been very difficult these past few months as I've had a flare since Dec. At any rate, I understand that being in college and having roommates, etc, etc-it's a lot. I find that privacy during my sick times helps me relax. At any rate, I was diagnosed while I was in college and back then, 20 yrs ago, there wasn't anything like this forum. Plus, there's so many more resources and options to at least try. I'm referring to supplements and diet though-not meds.

I see you're taking Glucosamine. I would switch or add L Glutamine. Get it in the powder form, mix a bit with water (it's doesn't taste like anything particular), and take it 3 times a day. I've noticed a difference just in the past 3 days since adding that. I realize, it may affect you differently, but I think it's worth trying. Also, I just got my Dr to prescribe VSL #3, an over the top probiotic. Again, started it in the last 3 days and am already experiencing relief. Hard to say exactly why but both of these are relatively simple things you can do to try to help your body heal itself.

Good luck. You will get better, even though it sure doesn't feel like it.

:)
Posted 4/20/2013 12:52 PM (GMT 0)
Our lifes are not similar at all I am 43 and married with a daycare in my home but yesterday I got the opportunity to experience a tiny bit of what you go through. I was at home preping for colonoscopy and I had a sub in my home along with the kids. It was so difficult and embarrassing to have other people around while this was going on. My en tire house smelled very strong of BM I just wanted to be alon e blush I hope things get better for you. I am sure the stress of dealing with roommates (especially ones that don't understamd) has not helped your health. 
Posted 4/20/2013 3:31 PM (GMT 0)
Thanks everyone for the support! Its nice to know i'm the not only one with these issues, because sometimes at school I feel very alone. I know the stress of school and worrying about my roommates doesn't help my UC. My flares have been stressed induced in the past I'm pretty sure. What a vicious cycle haha. I am usually one of the most relaxed people and handle stress well. This time it's just getting to me. I think it is the lack of alone time that has not allowed me to "de-stress".
I'd like to think that I have mastered "the nothing is bothering me" act too haha. I went out for a friends birthday last night with the most awful cramps, gas, blaoting, and D. Not fun (thats basically what spurred this rant). But I pretended I was fine and acted normal. Not exactly a fun night but I made the best of it.

Bluechair, I'm gonna ask my doctor about VSL #3 at my next visit. It's def worth a shot to see if it helps. I will look into adding L glutamine too, what are the benefits of that over glucosamine?
Posted 4/20/2013 3:57 PM (GMT 0)
I'm pasting a good explanation regarding glucosamine vs L-glutamine:

Glutamine is a type of amino acid your body makes from glutamic acid. Amino acids are the basic building blocks of proteins. Glucosamine, however, is a type of amino sugar, which means it contains properties of both proteins and glucose. It is part of the structures of chitin, which is the outer shell of shrimp and shellfish, animal bones and connective tissues.

Glutamine provides fuel for your gastrointestinal tract, particularly in the cells in the linings of your small intestines. According to biologist George Mateljan, author of "World's Healthiest Foods," glutamine also provides the main structures for these cells to help them resist against disease-causing microorganisms and minimize the absorption of allergenic molecules. Your white blood cells and muscles uses glutamine, along with glucose, as an immediate fuel source.

Glucosamine plays a role in building cartilage, which is a series of connective tissues located between joints. This cushions the bones as they move along each other. The University of Maryland Medical Center states that glucosamine can help prevent or reduce the progression rate of osteoarthritis. Glucosamine supplementation -- when combined with another compound call chondroitin -- helps patients with mild osteoarthritis to reduce pain. However, it does not help those with severe osteoarthritis.
Sources

Although you cannot get glucosamine from your diet, you can get glutamine from meats, cabbage and beets, according to Mateljan. Glutamine is also available in protein shakes and protein powder mixes. Get advice from a physician before taking glucosamine.

WARNING
According to the University of Maryland Medical Center, glucosamine can negatively interact with some medications and other body functions. Minor side effects of glucosamine supplementation include upset stomach, heartburn, indigestion, abdominal cramping and diarrhea. Glucosamine can cause insulin to work less effectively in absorbing sugar and cause stomach ulcers when you take anti-inflammatory drugs with glucosamine.

And taking L-Glutamine on an empty stomach is key. :)
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