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Recently Diagnosed UC :/

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Ulcerative Colitis
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Posted 11/2/2012 3:55 AM (GMT 0)
I am a college student. Two jobs, and was taking 17 units.
I recently was diagnosed with UC. It's been horrible.
My energy is depleting more everyday.
I have never... in my life, been this frustrated with myself.
I was hospitalized for almost a week, and missed two weeks of school which set me so far back that i had to drop a course. I was on asacol, 9 pills a day. but it made me so tired, i got off of it, with my drs approval until they received the results. My dr said I dont need to get back on them until i start with symptoms again and when i do get the symptoms i need to contact him asap so he can schedule another colonoscopy. The thing is for right now at least id rather deal with my symptoms than go thru another colonoscopy, i had one less than a month ago when i was hospitalized and woke up twice during the procedure, im so scared to have another.
However ive been so fatigued, even without the meds my energy is going away more and more every single day.
I'm independent for the most part and live away from my family so i tend to do most of my things on my own. I dont want to tell my parents about how much im struggling because im afraid theyll worry too much. But i really dont know what to do at this point, dealing with both jobs and school has become so difficult. I can barely focus on a thing. My lack of energy has made everything so much harder that i feel upset most of the time.
Posted 11/2/2012 6:36 AM (GMT 0)
my first thought is, this sucks, sorry you're having to deal with this -

#2 - school can wait - fix your body now -

#3 - your doc is an idiot if what you're saying really happened - if he is an idiot, find a new one now !

#4 - tell your parents - not a time to do this alone - this is serious stuff -

#5 - the asacol didn't make you tired - being sick did -

#6 - listen to what people tell you here - they know -

#7 - don't put this off - it won't go away on it's own - this is kick-ass serious s**t - sorry, but it's true -

#8 - take your drugs if you still have them - sleep as much as you can - your body needs rest to heal -

Post Edited (soystud) : 11/2/2012 12:48:22 AM (GMT-6)

Posted 11/2/2012 11:47 AM (GMT 0)
1207,

Welcome to the forum.

I'm sorry you're suffering, and are all alone in this.

I agree with soystud: You need your family's support, you need to treat this darned disease seriously, and  you need another doctor as well.

IMO, your incredible fatigue is not just due to the meds, but also because you are probably nutritionally deficient in major ways: B12,  and Vit. D3, and probably due to malabsorption a whole host of other vitamins and minerals which we all take for granted that we get from our foods.

Did you know there a big correlation between IBD and low Vit. D3?

Has your doc done any blood work on you?

To check for B12, D3 deficiencies, as well as anemia?

There are other things you can do to handle the symptoms: diet modification (trying gluten and dairy free), adding certain supplements like probiotics, L-Glutamine amino acid powder, and slippery elm powder, and then there is LDN, low dose naltrexone a drug with few if any side effects which have helped many.

There are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 11/2/2012 1:06 PM (GMT 0)
Are you having any UC symptoms now, other than fatigue? Are you absolutely sure you had UC? It's a little bit weird to be in the hospital for not even a full week and then come out being in remission. Did you do anything else other than Asacol? It is highly unlikely that the Asacol made you tired. It probably had something more to do with the disease or the remnants of it. Something just doesn't make sense that you were in such bad shape you had to be hospitalized and then less than two weeks later you aren't even taking any meds at all for UC. That's just highly unusual. I also believe you should tell your parents.
Posted 11/2/2012 1:12 PM (GMT 0)
oh man, definitely tell your parents! i know that my mom definitely does worry a little too much at times, but i don't know where i would be without all of the help/support she has given me!!

i also would say that maybe you need to lose one of the jobs, or consider a smaller course load. i know that the more stressed i get, the more my uc acts up.
Posted 11/2/2012 1:17 PM (GMT 0)
Ditto soystud.
Posted 11/2/2012 4:04 PM (GMT 0)
I concur with everyone... maybe telling your parents whats going on will allow them in to help you financially while you recoup physically where it doesn't continue to stress you body to the breaking point. When I am tired, I too get major UC symptoms and I have to take a step back and relax for a few evenings after work and perk myself back up again..
School will always be there for you, you can postpone medically and it not affect any grants or funding you might have invested in it. Most colleges do this here. You would just need to show them the proper paperwork from your doctors.

The 5ASA shouldn't make you tired.. it is probably vitamin def like Inso suggested...
And the biggest suggestion is this: You have to accept your limitations at this point and not stress over them... the sooner you can relax and give yourself the down time you need right now the sooner everything else will fall into place. Your stressing yourself out which could also be why your so tired...
Take a break, Hun! And tell your family!
Posted 11/2/2012 4:27 PM (GMT 0)
Thank you guys, I really needed the proper advice from those who've been there.
Soystud, I will take your advice, I found it odd that he didn't want me on meds until another flare up began.

Garylouisville, I also thought this was weird when I read more about UC, but prior to my hospitalization I was in that condition like a week prior, I entered an all liquid diet and for about a week only with IV. So in total my stomach had about a two week break from food. During the hospital stay I was on Potassium supplements, antibiotics (since they werent sure what it was), and asacol. I guess I have been in remission since I havent been throwing up from both ends (kind of disgusting. I know.) I still have some stomach pains here and there and get some nausea with certain foods that mess up my whole day. But nothing like I did when I had to go to the hospital.

InSoFla, my doctor hasnt recently checked my blood, actually he hasnt since I was in the hospital. the most recent blood work he did was about two weeks ago, I took the Prometheus blood test which ultimately aided in my diagnosis, but to my knowledge there hasnt been any testing of my blood.... Which is now sounding pretty obvious that it shouldve been done given that I notified him of how fatigued I am.

ToobusyforUC, I think you guys are pretty dead on, If it was the asacol I shouldnt be so tired off of it, I have supplements but they all contain notable amounts of fiber, so I need to get new ones. And my diet has been pretty nutritionally flat since I'm kind of worried to eat most things.

I will speak to my parents soon, hopefully that can give me some piece of mind.

Can you guys fill me in about the colon removal surgery?
I saw a pamphlet in Kaiser that said they recommend it within 8 years of having UC because of the high risk for colon cancer? Is that true in all cases?
Posted 11/2/2012 4:30 PM (GMT 0)
"I saw a pamphlet in Kaiser that said they recommend it within 8 years of having UC because of the high risk for colon cancer? Is that true in all cases?"

Not true.

Red, Quincy, Old Hat, Old Mike they are all 20+ years of U.C. They seem fine.

I wouldn't want 20 years of U.C., I don't think I could last that long....
Posted 11/2/2012 6:34 PM (GMT 0)
"Can you guys fill me in about the colon removal surgery?
I saw a pamphlet in Kaiser that said they recommend it within 8 years of having UC because of the high risk for colon cancer? Is that true in all cases?"

the moon is closer to needing a colon removed than you are -
Posted 11/2/2012 9:46 PM (GMT 0)
1207CLO, welcome to the forum. You've gotten great advice from lots of experienced forum members!

I think what the pamphlet probably said is that a certain percentage of UC patients need surgery within 8 years of diagnosis. I know I read that about Crohn's - that about half of all Crohn's patients needed surgery within 10 years of diagnosis. HOWEVER, that data is based on years past. In more recent years, medical treatment of inflammatory bowel disease is much better, and most people do NOT need surgery. I've been diagnosed since 2001 and symptomatic since 1999 and surgery is not on anyone's list of what my future treatment needs.

Also, I want you to think about the word "remission" more carefully. Among us regulars, "remission" really means NO disease, not just fewer symptoms. If you are still tired and nauseated and having trouble eating, you are not in remission. You are right, though, about how you got better - many studies have shown that a liquid diet is about as effective at inducing remission as oral steroids. But I don't think 2 weeks was enough for you to get to a true remission. You did get better, though, and that's good, but you need to keep up with your meds. Your DR's advice, as you reported here, to stop your meds until your symptoms return, is just wrong.

Many people with UC find it very helpful to treat their illness from both ends. Taking oral mesalamine (Asacol) and using a mesalamine enema has been shown to be extremely effective at inducing and maintaining a true remission.

Please find a DR you can trust, and get your parents to help you out. This is serious stuff and you will get better, but it's going to take time and effort from you.

Hang in there.
Posted 11/2/2012 10:38 PM (GMT 0)
I agree that the pamphlet probably didn't actually say they recommend removal in 8 years. Most everywhere I read they talk about after 8-12 years there is a greater risk of colon cancer so they very strongly recommend getting colonoscopies every year starting at that time.
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