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Ulcerative Colitis
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Posted 3/16/2009 9:55 PM (GMT 0)

My name is William. I am a 21 year old college student who was diagnosed with Colitis about a year and a half ago. I never had a problem with it, even from the time of my diagnosis it was a very small issue, and I was told I never would have to worry much about it. So, I took my two Lialda a day, and I never had anything such as a flare-up or issue with my Colitis, the only foods I avoided were spicy foods and life was fine. I had my first follow-up appointment in December of 2008. My specialist did a small scope and said I was clean as a whistle, he could not even tell an existance of Colitis and said I could stop taking my medicine. I was very weary of this and told him that I would prefer to keep taking it, and he said that was fine. So I went on for the next month or so perfectly healthy. In this month I was last minute getting things together for a 6 month trip I would be taking to Santiago, Chile for school and missions. I was so excited, but stressed about this at the same time. Come about the second week of Janurary I noticed my stools changing some, like when I was first diagnosed, I didn't pay too much attention to it though I figured that it would just go away. After a week or so more it was worse, and my stomach felt like it was cramping ferociously, but I had never really felt this pain before. I went to the doctor after another week of suffering and they insisted that I had some sort of Bacterial infection. I told her, about my Colitis and she said she did not think that that was the cause, so gave me me medicine and sent me on my way. After a week I came back to her in worse condition, still very sick and told her I felt the same and some worse. She informed me that I did not feel the same and infact it was the medicine making me feel this way now. That this would go away soon, and by the time I got to Chile my stools should be back to normal and I will feel fine. So February 3rd comes along, my flight day, I go to Chile still not well, but assuming it will happen, because the doctor told me it would. The first few days I was fine, I ate, I walked around, I enjoyed the city. about day five I became bed-ridden, and couldn't eat much through the following days. By that Friday I was visiting a Chilean Gastrointerologist. He put me in the Hospital and that is where I lived for the next ten days. It wasn't the worst experience in the world, the majority of my nurses were quite attractive, and I was able to practice my spanish seeing as the nurses only spoke in Spanish. I left the hospital after that ten days, and a few days later had to return to the states to work on getting better. I lost almost 30 pounds from the time I visited the Bacterial Infection doctor in America, to the time when I returned. I would say about 20 of those were lost in the hospital. That has me down a lot. None of my clothes fit, I have to wear a mini belt just to keep my pants up. And weight isn't coming back nearly as quickly as I thought it would. I am not too preoccupied about having to return to America. It was a hard decision to make, but I prayed hard and knew it was the right thing. God gave me a strong peace in the fact, and I have been somewhat okay with it. Until about a week ago. This is when I realized, that I had been sick now for 2 and a half months. I havn't taken a solid number two in over 2 and a half months. I have gone to the bathroom more in the past 2 and a half months than any normal person has in the past full 365 day year. I am a semester behind in college, and financially set back from the way insurance is handleing the hospital bill. This prednisone I have been more or less consistantly on for the past 2 months drives my emotions out the window, it seems everything is exagerated except of course for happiness, that one stays pretty dull when it does come around. I say mean things to my friends, the smallest arguments turn into huge brawls, I think I lost one of my best friends last week. I think this is what sparked this depression state I am in now. I feel like my saddness has taken me into space and I am just going to keep flying deeper and deeper into it until something knocks me off course. But I don't know what can do that. I am tired of being sick. I am tired of being aggrivated. I am tired of hurting the people around me. I try not to use my pills as an excuse, I don't much like excuses. But I am not me. I am not William, I havn't been for a long while. I wish they could truly understand that. But they can't. So I anger them, and they stay angry. And my saddness is exagerated and I can't control it. And everything boils down to where I am now, where I have been for the past few days. Lying around in the dark, forcing myself to get up and make a sandwich. Forcing myself to eat the sandwich. Forcing myself to pick up the water and drink it. I don't want to do anything. I have no drive for anything. I am just tired of being sick. I want my life back. I want to be William again. I want to laugh with my friends again, and RUN, I want to run. I have no muscle anymore, no fat, no body, no nothing. I can't exercise, I can't play frisbee. This disease went from being never noticed to taking over my life. And I just don't know what to do. I don't know when I will get better, no one ever knows with this Colitis. It could be tomorrow, it could be 3 more months, it could be never. I try not to think about that too much though. That is not going to get me anywhere. The new doctor says I may have Crohn's rather than Colitis. I don't know what much to think of that. Maybe if that is true they can get me on different medicine to treat the right stuff.  I know that is a lot to have said. I feel better for having typed it out. If you took the time to read it, I hope that you can feel my heart some, I wish I could talk to someone who maybe felt the same. No one here knows what I am talking about. I don't even try anymore. I did cry for the first time today about it all. In fact I started to cry again now. I am just so tired of being sick. And the stress, and the pain and the emotional roller coaster. Anyway... I guess the happiest note I can leave on is, War Eagle- Woman's Basketball made it to the NCAA Championship :-)

Posted 3/16/2009 10:09 PM (GMT 0)
Hi William, and welcome to HealingWell. Everyone here can totally relate to you, and that's the best part of finding this forum. I'm sorry that you are so ill, but hopefully with the right doctor and meds you'll be able to get some relief. Pred can have nasty effects on people; I know it did me and I'm usually a pretty calm person...I can't tell you how frustrated I was...and nasty too. It was a terrible feeling and I did cry--a lot. But that's where we come in; you are welcome to post your frustrations, questions, and even the good days you have. There are a lot of smart and informed people here...and just plain nice and supportive. Have you tried any rectal meds? How do you like your doctor? Let us know what meds you are on. Glad to have you aboard!

Posted 3/16/2009 10:17 PM (GMT 0)
William,

First, you need to realize that you are not alone! Luckily you have found this forum, and if you are anything like me, check it regularly just to know that there are others out there that are going through the same thing. I am 22 years old, was dx at age 15 with colitis. I did not have a flare for 7 years, and here I am currently in a flare since before Christmas. I have this disease, it does not have me. The medicine sucks, the bathroom trips suck, the pain sucks, but the bottom line is that life is way too short to be unhappy. I know how you feel about people saying you have changed and that you are not yourself, so it does help to talk to people who know how it feels to not want to even get out of bed b/c of the pain.

I'm sorry you have to be on Prednisone, I told my doctor I refuse to take it, and that it would only be my absolute last resort. Maybe you should try adding some other meds, maybe some rectal meds as well to try and get the inflammation under control. This is by far a horrible disease, but you have to find your happiness in life and realize that it is possible to live with and that things will get better.

Jeremiah 29:11
"For I know the plans I have for you said the Lord. Plans for hope and a future."
Posted 3/16/2009 10:36 PM (GMT 0)
Hi William!  Welcome.  Sorry you're having such a tough time of it. It's horrible when the docs just brush off your symptoms as something else and don't really listen to what you are trying to say.  Hopefully now you will have found a good GI that listens to you and will give you some meds that will get you the road to recovery.  Are you still taking the Lialda?  Have you ever tried any enemas - like Rowasa?  What dosage of pred are you on?

Posted 3/16/2009 10:42 PM (GMT 0)
William,

UC gives us our fair share of ups and downs, but hang in there and stay positive.

You've been through a rough time, but it's good to see that you still found a positive in this - yes, 10 days with attractive nurses in Chile can't be too bad...

Stay strong and also research the treatment options so that you are more aware of what you should or could be doing. The more you know, the better you can discuss your treatment with your doctors and hopefully get better attention from them. Rectal meds to complement the oral drugs that you're on may be a good place to start.

And congratulations on your team making the NCAA championship. I'm looking forward to some good games and need to still work on my bracket picks for the NCAA men's tournament.
Posted 3/17/2009 12:42 AM (GMT 0)
William, your letter was so articulate and made me cry because I have felt that way so many times. I got diagnosed in 2005 when I was 26 and everything changed so quickly. I had to take a semester off of school, could no longer eat or drink anything remotely enjoyable or do anything I liked to do due to lack of energy and a prednisone induced depression. I had to be hospitalized for dehydration because even the thought of water made me sick. I have achieved some degree of remission since then, sometimes I feel pretty darn good for a couple months before a flare begins again. The trick to living with this disease is taking advantage of any semblance of health that you can, whenever you can get it. I never take anything for granted anymore and after all is said and done, UC has actually made me appreciate the 'smaller things' more than I ever had before.

Like when I was in Miami last month and spent the whole day on the beach without running for a bathroom (No lie, this was one of the best and luckiest days)

Or when me and my boyfriend went out for Mexican food and got drunk on Margaritas last week, and I felt indestructable the whole night (as you can imagine the next day sucked ;-))

Or waking up in the morning to my alarm and realizing that I actually slept an entire night without having to get up to the bathroom!

Or being able to go a whole day at work without using a yucky public bathroom, WHOO!!

Right now I am coming out of a flare, and the Prednisone has started to really make me feel better and decrease frequency, but I also get mood changes from the high doses. I am lucky to have amazingly supportive family and friends, and sometimes I do get very down, but it seems that the more courses of Prednisone treatment I go through, the mental symptoms have decreased for me. Maybe I have gotten better at realizing that my anger and sadness are a result of the meds, and I can separate myself from it, I dont know...

My best advice to you William is to stay active in this group, it has really saved my life and sanity at times. We all know what you are going through, many of us have been there before, and are still there now. I hope you will find your happiness from the little things that most people take for granted, because the little things do matter, and will carry you through the really awful times. Good Luck and Good Health to you William!
Posted 3/17/2009 12:56 AM (GMT 0)
Welcome to the board. You will find a lot of support here. It's nice to know that you are not alone. I hope you feel better soon. I'm on pred myself right now and have been feeling down the whole day. I'm hoping Spring being around the corner will help lift my mood.
Posted 3/17/2009 1:36 AM (GMT 0)
Hey William, welcome to healingwell. I think everyone here understands how you feel to some extent. You should focus on getting better and try not to focus so much on feeling bad. I know it's easier said than done and I can't really give advice on how to do it because I walk around feeling terrible most of the time. I do however manage to enjoy myself when I am able to forget about my sickness. When I was at my worst, I was exactly how you are. I had no desire to do anything. Leaving the house was a chore. Eating was awful. The more I ate, the more I was on the toilet. Even if I didn't eat, I was still on the toilet 10x a day. Keep in mind, you will have better days, you will have more bad days, we all will... You should see if you can see another GI who can give you more details about your condition. I need to take my own adivce but unfortunately I don't have insurance. If you can find out exactly where the inflammation is, you will know what treatment is best. If I use oral meds and no rectal meds, I end up with a flare. Many of us need multiple meds and maintence medication. If the inflammation is in the rectum you might need enemas or suppositories. I hope you can get off the pred soon and find yourself again. If you have insurance, do what you can now! I can't even get a proper diagnosis because I have no insurance.
Posted 3/17/2009 1:59 AM (GMT 0)
This verse carried me through the worst of my flare:
He shall be like a tree planted by the rivers of water, that brings forth its fruit in its season. Whose leaf also shall not wither; and whatever he does shall prosper. Psalm 1:3
Posted 3/17/2009 3:55 AM (GMT 0)
William,

 I am so glad that you have reach out to someone to help you get through this hard time in your life. I am a mother of an nine year old little girl that was controlled by colitis at the tender age of 15months. She was so sick. Just like you are dealing with now. I have posted her story under the post of Haileys letter. Please take the time to read her letter. She has been well and off of ALL medications for three years now.

 I read your whole post.... I understand how you feel... I want you to know that you can overcome this illness.  You can defeat it. You need to research , research, and research some more!!!! I know you are weak and just feeling so angry inside. That is OKAY. Feel the anger toward the UC not toward  your friends. You need to stay strong for YOUR body. I was strong for my daughter for all those years . She was sick for six years straight. I honestly worried about the days ahead everyday that her life would give her. It was hard, but it has made me such a stronger person because of it.

 YOU need to think about what could of caused this to happen to your body??? could it of been a bacteria that you encountered? Could it be too many antibiotics??? Could it of been stress?? Think about when it started and maybe what could of caused it. I know it is VERY overwhelming. When you have the dark days, please reach out to others on this forum to help you get through the dark days.

I will be thinking of you , email me anytime , my email address is in up by my name.

 

Posted 3/17/2009 5:47 AM (GMT 0)
Hi William. I read your post and and I am in a remarkably similar situation to yourself. Only I am two years behind in school now due to UC. Other than that, we're both 21 year old college/university students dealing with this disease. about the only part of your situation I can't really comment on is the prednisone problems. I've been on a pretty high prednisone dose for months and am only starting to have minor hip and shoulder pain. I haven't experienced any kind of emotional side effects so far. If you want to talk ever feel free to send me a PM and I'll give you my e-mail or MSN.

I am currently in a bad flare that's lasted abour two and a half months now. And I know how it can get, the suffering which seems to go on forever with no real end in sight. I stay as positive as I can knowing that physically this can't go on forever, that one way or another the suffering will be over eventually. But everyone has their own ways to stay positive.

It's good you've joined our community, everyone seems to have taken to you pretty quickly. I've found some nice people here, but I found it even better when I got in touch with the Crohn's & Colitis foundation and they put me in touch with people over the phone who had dealt with what I'm dealing with now. All of them want to keep in touch and those who are local want to meet up for coffee. I've met some great friends through there and found some solace in talking to them. Consider it if you need someone to talk to.

Everyone has their own way of dealing with things. I hope you find yours and stick to it.
Posted 3/18/2009 10:26 PM (GMT 0)
Thank all of you so much for your replies. I am sorry it has taken so long, and I don't really know how to respond to every one of you. But it really warmed my heart and made me feel so much better just finaling knowing, instantly, not dreaming and reading online, but knowing that other people know how I feel. I feel so much less alienated for that. As far as medicine I have never done any rectal medicine many of you spoke of, I guess you mean different enemas? I am not even really sure what you are talking about. I know when I had to have my last lowerscope I had to do an enema, it was probably one of the least favorite things I have done, although at least it didnt have the horrible taste of the fleet ginger lemon scope prep. UGH. But this morning I ended up going to the ER, I had kind of getting progressively worse over the past several days, I think once my depression set in, I began not to eat, and then didn't drink as much and wasn't so active. So I ended up using the bathroom about every two hours, and then started up again during the night and I was so scared to have to spend days in the hospital again and lose the great weight i lost before, which i cant stand to lose now because i am down to 127 TERRIBLE. I was pushing 160 when this all began, and I was so proud. The doctor there ran many tests, and did some x-rays of my chest and stomach. I got 2 bags of IV because I was super dehydrated, when they drew my blood it was as thick as molasis and as dark as those nasty cherries with the pits in them. So after everything and many hours he consulted the specialist on duty and he said boost up my prednisone, so now I am on 60 mg of that a day, and then all my other medicine stay the same, and I was able to leave. Oh, and then they gave me some paxil to help with my moods. I have never been a big advocate of those kind of pills, but I guess I will have to be sort of a hypocrite here and hope that they work. I do like my specialist here, he is very kind and puts everything out on the table, I am kind of used to that now with doctors, but i think it freaks/excites my mom some when he starts talking about new medicines/surgeries, and stuff and I just take it all in as the what ifs they always talk about. Kind of like when you first experienced signs of colitis and the doctor says, well... it could be hemoroids, or a polyp... or it could be cancer. And your jaw just kind of drops, but they have to mention it all. And then months and tests later they find colitis.

For the woman with the daughter, thanks for sharing that, that is so scary, I did not even know that someone could have colitis that young, that is a hard road she has ahead. I had a Chemistry teacher my second year of college who was diagnosed with colitis when he was 13 and i thought that was very young, luckily for him though he hasn't had any real problem since then.

Focusing on small happy things does help. I like seinfeld, when i get to watch that i get pretty happy. WHen my friends call or text me it really brightens my day, it is hard to be trapped here with a family i am not really close with when all of my friends are 200 miles away at school... but it really makes me happy to talk to them. Also, I get pretty excited when i notice less bathroom visits a day, that is probably one of the best moments in a day. Because you realize you are that much closer to remission. OH also, today, in the ER, I burped and farted at the same time. I know that is pretty nasty, but I didn't think it was possible, that may have been the highlight of my week. So the small things definitly help some.

BEING IN COLLEGE and this disease are terrible it seems. It didn't seem so at the beginning, but now I don't even know when I will be able to return, 2 semesters is pretty rough, will are you already back in? or will you get back in this summer? I have been on a flare up for about the same amount of time as you, it is really awful, I want to see an end in downt he road but it is hard to sometimes because I dont even remember what it feelsl ike to be normal. To run, and eat, and not worry about wehre the nearest bathroom is, but I know one day it will go away, that shoudl be enough to hold me through, just that one day could be a week from now, or another 2 and a half months. gross.  Right now I am shooting to make it back to summer school, hopefully that will work out, before i was hoping to make it back to campus after this week (their spring break) but it looks like that won't happen now.

Thank you all again so much for reading and talking with me, and sharing some of your hearts back with me. It raelly helps out just to read it all. Thanks for sharing every way you know to look to the bright side, whether it is the bible verses you shared with me or just little ways to get through the day. You are all so awesome.

-William

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