Living with UC

Introduction:

My name is Lynsey. I am 25 years old and was just recently diagnosed with ulcerative colitis a few months ago and am still trying to get it under control.

Symptoms:

contantly needing the washroom, still have blood in my stool and am constantly tired. Food seems to go right through me.

My Story:

I was very sick and getting worse and worse all the time and I could not figure out what was wrong. I was very concerned about the large amounts of blood in my stool yet was very embarrassed to tell anyone for the first little bit. I was sick for 2 months before I got into see a specialist, I had a colonoscopy with no sedative and it was awful. It was 4 months ago I diagnosed with UC and have been on medication since. I was on prednisone for the first 2 months after being diagnosed and I will be on Salofalk (5-Aminosalicylic Acid) indefinitely.

I am still trying to accept that I have this disease and am still trying to deal with getting it under control. My boyfriend has been really great with making sure I am eating right and when i’m down and upset or depressed he always knows just what to do to make me feel better. Sometimes I will think I can get away with eating just a little bit of something bad but regret it so bad afterwards. I have recently started a food journal and am really trying hard to stop this vicious cycle. My family and friends have been great to talk to when I need them but they can only help so much because they are not living with this disease and don’t full understand how I feel. I am just happy that they have all been there for me when things get a little rough.

Something I have noticed is my joints are very sore all the time, I’m very tired and am just starting to get color back in face, I was white as a ghost for a while. The thing that scares me the most is the thought of surgery, I never want to get tp that point. I’m only 25 and its really unfair that I have to live with this forever.

Where I’d Like to be in 1 year:

In 1 year I would hope my UC has gone into remission and I no longer have to plan where i’m going or always needing to be close to a bathroom. It’s very inconvenient.

written by Lynsey

submitted in the colitis venting area

 




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7 Responses to Living with UC

  1. Adam
    Adam May 25, 2012 at 8:17 am #

    Hi Lynsey,

    Thanks for sharing your story, and man oh man, I’m feeling for you right now, cause I know first-hand that those joint pains you are talking about are the worst. It’s crazy right, how you can be dealing with colon inflammation and then all of a sudden the creepy joint pain kicks in too.

    If you can believe this, the joint pains are pretty darn common. A few months back I ran a survey on the site with 99 other people specifically on the joint pains. You can read all about it here, and you’ll definitely not feel alone after you see how many others were going through the same stuff. Here is the link:

    https://www.ihaveuc.com/99-person-colitis-joint-pains-survey/

    I think its a great idea that you are starting a food diary. I myself have found food to be a major factor in how I control my UC, and many people have found some pretty mind boggling things when they start taking note of foods and how they play out with the digestion and colon in specific. So I wish you the best with that. As hard as it might seem, its true that hard poops and no bleeding is possible, and getting the joint pains under control is for sure a possibility. HANG in there, and big pat on the back to your boyfriend for being so supportive. I personaly think he should go buy you some nice flowers for sharing your story on the site…:)

    –Adam

  2. Shannon May 25, 2012 at 8:47 am #

    You are not alone! Joint pain is so frustrating! I feel like an elderly lady trying to live in a young persons body. The only thing I can do is rest or take a pain killer so I can keep going.

    I have done a food journal and it has helped tremendously! I also did allergy testing to find out what I am sensitive to. And yes, if I give in and eat something off my list of good food I suffer. But as many have found, I am healthier than most people I k.ow for the foods I eat and the exercise I get. I find gentle yoga helps when I have joint pain. It keeps me moving and helps lubricate my joints.

    Good luck! Keep reading here and you won’t feel so alone.

  3. Shirl May 25, 2012 at 9:46 am #

    I also relate. I have 2 types of colitis, but was diagnosed last summer with UC. Joint pain was never really an issue for me until this past fall- and fatigue. I went to a Rheumatologist and was put on Sulfasalazine, but made me pretty ill. So back on the Asacol & I take a supplement for joint pain that has MSM- a natural sulfur based product. It’s believed, and the same with Sulfasalazine, that sulfur is beneficial to arthritis in the joints. (It does help) I still have a lot of trouble with shoulder pain, even wakes me up at night.

    UC is definitely a chronic inflammatory condition that I believe for most to be systemic.

  4. Theresa May 29, 2012 at 11:58 am #

    I am the same age as you and I was diagnosed officially a year ago. Just know you are not alone, I wouldnt wish this on anyone! I just try to keep moving to avoid pain and cramps. I get up and stretch often, whenever possible. Originally I was given just canasa and now more recently I have to take lialda indiffently. It works, I’m not excessively running to bathroom. So scary, I want to have more kids one day!

  5. Alison May 31, 2012 at 10:33 am #

    Lynsey,
    I am also 25, was diagnosed at 24 but it has only been about 7 months since my diagnosis and when I started treatment. The first time around I was embarassed to say anything, and completely regret that now. I spent a week in the hospital in January and after heavy doses of who knows what along with two blood transfusions, I was sent home and continued to take Asacal (4 pills 3 times a day) and was on a diminishing dose of prednisone. I’ve been off the prednisone now for about a month and just noticed symptoms returning about 2 weeks ago. My GI put me on mesalamine enemas for two weeks to see if it helps but if not, back on the prednisone I go and there was talk about using immno-suppressers or something. I’ve noticd alot of this has to do with my stress level (or at least I think it does). It’s great that your boyfriend is supportive, I can relate to that as well. I just want you to know that you are not alone. This disease really stinks but when you finally hit remission (and you will!) you’ll feel so much better. I wish you the best in learning how to deal with this because I know I’ve got a long way to go yet but I won’t give up or let this disease control me. Don’t get depressed, you need to enjoy your life…especially because we are still so young and have a lot of life left ahead of us. Good luck with managing this and thanks for sharing your story!

  6. Carmen June 1, 2012 at 6:45 am #

    bummer, my daughter has UC since she was 2years old, she is now 32. we knew all the bathrooms in town and in the country. but, as a routing, you can manage your UC later on. cortisone, asacol, a lot of tea, a good diet. no fried stuff, and the list goes on. colonoscopies every year.
    I had like a spread sheet, with the time, what she ate, what kind of medicine, what food, and specially a remark column where it says what happened that hour or day. just to find out maybe the trigger, because it is some times physiological. good luck ! thanks for sharing.

  7. Justin
    Justin June 23, 2012 at 6:55 pm #

    Hey there! So sorry to hear your going through a rough patch, I’m pretty new to the disease so I can’t offer too much advise except probiotics really seem to help. And I drink a little aloe vera juice in the morning and before bed it really seems to help with the inflammation pain. I feel your pain with the sore joints, my knees and shoulders feel like they are about to disintegrate. It sucks feeling so old and not even 30 yet. Just hang in there and I wish you a speedy recovery

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