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Finding the Cause of My Colitis and Finding Myself Again

Introduction:

I am 22 years old. I was just diagnosed this past weekend after a colonoscopy on June 21st. I am currently on Prednisone for immediate healing, but am picking up a prescription for Mesalamine today.

Some more about me:

I’ve been working as a server/bartender in a restaurant for almost 2 years. I like to paint, draw, write, play video games and read.

Symptoms:

I’ve been experiencing symptoms for about a year or so now, at first it just started with some extreme stomach pains and a little blood in my stool. Those went on for a few months, until eventually they started to go away. I went awhile without any symptoms and figured it must have just been something that I ate, until the symptoms came back, only much MUCH worse. As of about 3 months ago I started having chronic diarrhea, a lot of blood in my stool, frequent URGENT bowel movements (and painful ones), and extremely painful and irritating stomach pains. After my colonoscopy, I was diagnosed and am glad to say that even after a few days of being on treatment, a lot of my symptoms have not been as extreme!

Finding the Cause of my Colitis Finding Myself Again

I am not at all sure where to start (it seems like there is a lot to get out) so I suppose I will start simple- at the beginning.

I have never been one to take my problems head on… At first when I started experiencing symptoms, it was embarrassing and it took me awhile to admit that I needed to go to a doctor. I was a losing a lot of blood and I think that’s what scared me into taking the steps to figure it out. I brought up the diarrhea and the bloody stool to my doctor at a physical examination and I told her that I was scared. How could I not be? I didn’t sleep a wink the night after I saw my toilet bowl filled with blood after having a bowel movement. But, my doctor assured me that since it was bright red blood that she wouldn’t worry too much about it. You know, just drink more water and get some exercise. After about 2 weeks, I was back in the doctors office. I had increased my water intake as was instructed, but due to my stomach pains I found it very difficult to get up and exercise. Nothing had gotten better in fact, it had gotten worse.

I was still bleeding a lot and having diarrhea. My bowel movements had begun to become a lot more frequent (minimum of 5 times a day, sometimes 7) and urgent. I would wake up multiple times in the middle of the night to go to the bathroom and have had a few accidents due to waiting for my significant other to finish on the toilet. I had stomach pains that would put me in tears. It was starting to become a huge annoyance more than anything. That’s when we starting testing. I had a lot of blood work done to test for food allergies, Celiac disease, etc… and a stool culture to test for any viruses that I might have picked up (e-coli, stuff like that) and surprise surprise… they all came back negative. So. More blood work had to be done.

After losing so much blood from passing bowel movements (especially so many a day) I was beginning to worry about losing even 3 tiny vials of blood for the tests that they had to do. I started getting comments from people that I worked with and people that I had seen outside of work that were scary to hear. “Are you feeling ok? You look really pale.”, “You should go outside and get some sun.”, “You look like you’ve lost a lot of weight.”, “You should eat more.”. My boyfriend even told me that some of his friends who had been over recently were starting to ask about me as well. It was tough hearing all of those things and not only did it have me worried for my health, but it didn’t have me feeling very good about myself.

I’ve always been a skinnier girl and especially in my high school years I’d have people (mostly other girls, of course) throwing comments at me such as…

“Eat a cheeseburger, girl!”
“You look like a skeleton!”
“I’ll never see why guys can find that attractive…”

And it started to get to me. I ate probably 3 times more than the other girls my age (probably still do, in fact), but I still looked somewhat unhealthy. More so now that I’m actually sick. There wasn’t anything I could do about it then and for awhile I had lost hope that there was anything I could do about it now. I didn’t have a name for my condition yet, I was still waiting on various test results and therefore- I could not be treated.

Being social went out the door for me, as well as my mood. I was extremely irritated and frustrated all of the time, anti-social, and I was beginning to worry most about my relationship with my boyfriend. We have been dating for almost 2 years now after being best friends for 8+ years, and we live together. He’s been my support throughout all of this, but I still haven’t been treating him right. Between the lack of sleep and frequent stomach pains, it caused me to become short and snappy with him about… well, EVERYTHING. Some might say “Well, you live together. Couples bicker, it just happens.” But it was more than that… My entire personality had changed. I was NEVER happy, never as bright and peppy as I used to be, and I just felt depressed. Still do, sometimes. But, we sat down and had a nice long talk about it. He missed seeing me happy. He understood that there’s something wrong with me and he told me that we just need to be more positive, and I realized that he’s right.

My condition does not define me and I need to take control. If anything small starts irritating me or angering me, I just tell myself- “Is this really worth it? Anger is a secondary emotion. There is something underneath that is making you feel angry. Find it… and control it.”. That method has been working well for me. It makes me feel great to hear my boyfriend finally say “Now THERE is the happy girl that I’ve missed and I want to see more of her.”.

My hardest time so far with this disease has been before the diagnosis (and diagnosis came after my colonoscopy this past weekend, along with immediate treatment! Thank GOD!)

But now that I have a name for my problem… I have a solution.

Over 900 words have been used to tell my story, so thank you to all of you who have taken the time to read this! Any advice/questions are more than welcome!

Stay positive,and hang in there!

Medications:

After my colonoscopy, I am now on Prednisone. It has only been 4 days, but I am just worried about what side effects it might have on me. I haven’t been getting very good sleep and I’ve heard that the steroids can cause mood swings and well. I’ve worked hard on getting my good moods up the past week and I just don’t want all of that to be for nothing…
I am happy to say though that my symptoms have subsided, if not virtually disappeared altogether! For now, at least. But I’ve started having normal bowel movements (no more diarrhea!) but I’ve still noticed a tiny bit of blood in my stool.

written by Haley

submitted in the colitis venting area




6 Responses to Finding the Cause of My Colitis and Finding Myself Again

  1. UC Family Boy
    Uc family boy June 30, 2013 at 4:19 am #

    Hi Hayley,

    Some of them comments spoken sound familiar…hmmm!!! Where to start, what to say!! I still see myself as fairly new to UC but have been diagnosed 18momths ago, still no full colonoscopy and after seeing my GI this last Thursday…still not one booked in just yet. Don’t know why but all I know is they want me to stop relapsing every month or so as I do on just a hand full of asacol a day!

    My advise is to follow your doc as this is the best place to start and than look into current projects of increased work with success like fecal transplant which I am hot on right now but as yet more some time before I do it.. (I have my own theories on this and making it more successful than its current rate…

    I am sure many will be about to share in your dispare, remember on here you at not along. I tend to follow what people say on here more so than write as most others have better ways of saying things than I and its also my way of hearing if people are well. Keeps me same and feeling like I am not alone in this journey.

  2. Holly in Virginia
    Holly July 1, 2013 at 12:32 pm #

    Hi Haley,

    I was just diagnosed in January. It does get better though it seems to be taking a while to figure out a good long term solution for me. I would try not to worry too much about the prednisone. It worked great for me. I stopped bleeding within the first week. It did mess with my sleep quite a bit but I found taking Tylenol PM 30-60 minutes before bed helped a lot.

    Best of luck to you!

  3. Haley July 2, 2013 at 12:58 pm #

    Thank you both! Physically I’m feeling very well, although occasionally I’ll wake up feeling sore. But as I’m told, that’s a very common side effect from the drugs. My biggest concern now is how expensive the UC pills are! I picked up my prescription for Asacol (mesalamine) about a week ago, and I was surprised to find out how much they were… $100! I mean… It’s a good thing I have insurance or else they would have been over $800. Good thing for that, but even so- I’ll be taking these for the rest of my life, right? It’s a lot of money to pay each month, but hey. I suppose when it comes to being healthy and happy there really is no other choice. That’s what I’ve been keeping in mind. I have friends here and there throwing out options to try and see if I can’t make this more affordable…

    I’m confident that it will all work out!

  4. Ashley M July 3, 2013 at 9:35 am #

    Hi Hayley
    I completley understand what you’re going through and while reading I wanted to cry ! I had a such a hard time explaining to people what was going on! I mean who wants to explain they have bloody stool? When I told one of my friends she went ewwww and looked at me in disgust. I felt doomed. I was so ashamed I didnt want anyone to know anything except for my family. I started the same way with you with the bowls full of blood and the endless blood work. My mom was constantly worrying about my hemoglobin levels and I was exhausted almost always. It was so hard going to school 8 hours a day and explainingto people why I couldnt walk a few feet and that my joints hurt. They all thought I was lazy and acting old. (Im a junior in HS now, this is during my freshman year) I eventually had to have a total colectomy after almost all medicines failed in a span of 9 months. I am so much happier now,but I cannever forget the pain UC caused me. I hope you will be okay! If youwant to email me you can! Just ask!

    Lots of love, ashley

    • Haley July 5, 2013 at 8:17 pm #

      Thank you, Ashley! It really comforts me to know that there are others who know EXACTLY what I’m going through. I know what you mean about feeling exhausted all of the time. I work as a server/bartender, and sometimes I’m scheduled during the slow shifts by myself. Normally, I would clean as MUCH as I could and find tiny projects for myself to do throughout my shift to make time go by quicker… but when I started getting more sick, I found myself completing only the bare minimum of my required cleaning before I would have to take a break. The times that my boss saw me, I was afraid she might think I was just being lazy. But I did eventually explain the situation to her. I find myself considerably lucky that my employer is so understanding, especially after reading about so many other people who have not been as fortunate to find treatment as quickly as I.
      I’m sorry about the loss of your colon… although I don’t suppose you are after hearing that you’re much happier, haha. I can’t imagine having to go through all of this mess and still going to school! Especially high school, ugh! Kudos to you though, I hope you’re doing very well!

  5. Bethany July 4, 2013 at 10:30 pm #

    Haley,

    Your story sounds incredibly familiar to me! I went through a lot of the same steps as you did except thankfully and sadly I was a lot more sick than you and was diagnosed after being sick for 2 weeks and in the hospital for 4 days. The part I can relate the most to you though is the relationship. My fiancee and I had been together for 3 years and had just bought our home together in July of last year. We had hit a rough part in our relationship shortly their after and then I got sick the third week in September. Honestly, as horrible as it sounds, getting sick was the best thing that could have ever happened to me. It has strengthened our relationship beyond belief. He has been my rock and held my hand and supported me when I couldn’t even take care of myself. I went through a lot of the same emotions that you did. Depression was a big one for me. I didn’t want to be around people. I didn’t want to talk or socialize. I just wanted to be left to wallow and cry. I became very short and angry with him all the time because I was angry with myself and angry that I was sick. He brought me back. He stayed with me and helped me and made me smile. His only concern was making me feel better even when I was awful to him. Now, as we are only months away from my year anniversary of diagnosis we are meeting with surgeons to discuss the possibility of colonectomy. I have tried and failed on the diets and medications and have now recently been diagnosed with hundreds of pseudo-polyps on my entire colon and rectum that are starting to ulcerate and bleed making my doctors very fearful for cancer or sepsis. But even through these steps, my wonderful husband to be has stood by my side and in a matter of 22 days I will officially be able to call him my husband, colon or not.

    My point is this, after my long winded talk of my love, your attitude is amazing. Don’t let this disease control you or define you. And don’t be afraid to lean on your significant other. There will be hard days and having him close and letting him know that no matter how snappy you may be, you still love him and when your feeling better, make it up to him. We can’t do this alone and you will make it. Find your niche for your care and take control of it. Some of us do amazing on meds or with diet or even some with the natural method but take control of it and work closely with a doctor you like and trust, that is very key. Hope everything works out well for you and keep us posted!

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