How Do I Live with UC?

I was diagnosed January 21, 2014 with UC. I sort of diagnosed myself before the colonoscopy as my Father suffered with UC for 30 years before he passed away in December 2013 so I was very familiar with the symptoms.

Some more about Lori:

I am a 45 year old single Mother of 2 teenage boys living in Kansas. We live a very active life style as both boys are into sports and I am very physically active myself. I enjoy walking and going to the gym as well as Jazzercise.

Current Colitis Symptoms:

Bloody stools, abdominal pain, fatigue, anemia

How Do I Live with UC?

I have been in a flare since January and have had little success in getting to stop. I was released yesterday from the hospital after a weeks stay. I was dehydrated, abdominal pain, bloody stools with 15 plus trips to the toilet each day.

I have been seeing my Gastroenterologist almost weekly since diagnosis in January. Currently I am off work because of this flare. My job is stressful and I sit in front of a computer 9 hours a day with little relief.

I am trying to be as positive as possible since my diagnosis. I get distressed thinking I will live this way forever, ie; being fatigued, not being able to work out, go to social functions, return to work etc… Right now my entire focus is on my diet and finding a way to control this without being on Prednisone which is causing me my hands, feet and face to swell. I feel as though I have lost all my femininity and sex has gone completely out the window which is also a great concern for me. My partner is trying to be as supportive as possible but this is all new to him as well.

My sons keep asking me if I am going to be ok. I have no idea what to tell them except to be 100% honest and say I don’t know.

Prednisone 60mg daily
Lialda 1.2g tablets 4 tablets daily
Chewable multi vitamin
Chewable calcium supplement

written by Lori A

Adam Scheuer, founder of iHaveUC.com

Adam Scheuer, founder of iHaveUC.com

Ask Adam:

“I don’t want UC to be the focus of my entire life. Constantly having to explain what is wrong with me to friends and co-workers is exhausting. How do you deal with this on a daily basis?”

Lori,

I’m really sorry you’re having such a hard time right now, but you will for sure get better and your health will once again return.

Like you, I also had a family close family member who was living with IBD, but unlike you I had no clue what my symptoms were prior to my diagnosis.

Constantly explaining the disease to others is for sure a royal pain in the butt. It does for sure get old, and it is extra hard when you probably want to go through the day without thinking/talking/explaining UC (for at least a few hours at a time right..!)

But the reality is that the general population (and your friends, coworkers, even family included) most of the time have never heard of “ulcerative colitis”. So, you can only imagine where the rumors and ideas lead to in some of their brains. Just imagine you heard that someone is crapping blood and has a disease, lets say a co-worker of yours…For sure your brain would run wild too and be curious if you had no education about IBD.

I personally think its great that people are interested in what is going on with you and your health. That means that there are alot of people who really care about you Lori. I hear from lots of UC’ers who complain about the exact opposite problem where nobody is concerned with them and their health too. But at the end of the day(and especially if you’re on a high dose of prednisone such as 60mg/day) it can still get tiring going over the same old story over and over.

Here’s a list of ideas to help educate others correctly, without sounding like a broken record and keeping your sanity:

  1. Create a short story with your answer.  Write it down.  Maybe just a couple hundred words which you can rattle off in a minute or two.  But if you simply focused on answering the questions of “how are you feeling?” and “what is ulcerative colitis?” and “what are you doing to treat it?”, you can probably sum up most of the common questions others have pretty quickly.  If you want to go into more detail afterwards, you can make that decision.  If you don’t want to go into any more details, below are some ideas on how to educate the others and allow them to figure out answers to their own questions
  2. So, lets say you don’t want to talk about the subject anymore but someone is asking what UC is all about…I’d highly suggest you tell them to go to the iHaveUC.com website and read from the 2000 plus stories from others with UC!  Seriously, this site is made to help both UC’ers and also to educate others about what living with the disease is actually like.
  3. Wikipedia, kinda new age and all, but I use wikipedia all the time to read up about things I want to know more about.  Point someone there and they can get a quick idea about the disease.

I guess at the end of the day Lori, I’m a big fan of trying to educate others about UC.  And this includes people who don’t have the disease themselves.  Since that’s a HUGE group of people who are still thinking about UC’ers all day long.  And, as much as we didn’t sign up for this job, there’s nobody better than people like you and me to help spread the word regarding what the disease is, how it changes our lives, and what we are doing to try and control it.  It most certainly doesn’t have to rule your life.  The first year after a diagnosis is always the hardest, but things will improve and get better, and you might be the happiest person ever in the coming years too.  Sex will improve and get back to normal, and prednisone will go away.

Keep your head up Lori, and best of luck to you with diet.  It’s has helped me more than anything the past 5 years.

Best,

Adam Scheuer

5 Responses to How Do I Live with UC?

  1. UC Family Boy
    UC family boy April 30, 2014 at 2:01 pm #

    Lori,

    Do you know the extent of your UC. I think this will help understand symptoms, how to deal with the onslaught…etc.
    I would recommend cutting out all sulfur foods, and have some SAMe 2/3 in a week only.
    S-Adenosyl methionine in this supplement help in the process of clearing the sulfur that builds up in the colon that creates the H2S that we see in flares.
    Um, I offer a suggestion on dosage based on what works for me. But I had pancolitis, but after this (along with other steps needed after this) I only deal with my rectum and sigmoid being mildly effected. I have scopes to show both pancolitis and as of 4 months ago, just the end effected. So it’s why I ask the extent of your UC? It will determine if this helps.
    Also, if you want to learn more about SAMe, google it and UC and there is many papers. Also something else I have introduced is L-Carnitine which clears up fatty acid build up. Again google this and UC and you will see so much info. This for me is step one before introduction of prebiotics, and than finally FMTwhich will be for me as planned…8months from now.

    I hope your symptoms improve

  2. Karen April 30, 2014 at 2:06 pm #

    I have not heard the letters FMT with
    UC. Could this be explained to me? Thank you,
    I’m still learning …..

  3. Gabe April 30, 2014 at 4:38 pm #

    I can understand how you must feel. I went through years fighting my UC. Did go through the normal medications and diets. As to the diets I found that there really is not one for all of us it is all a hit and miss kind of thing. I would keep track of what I ate and how my body reacted to it.

    My life was taken over by my UC ,I think for two years I spent my time in two hospitals. Finally got to the point that nothing more could be done with my colon so was finally removed five years ago. Did go through many issues after that but as today I can say I am feeling better than ever. I think I can finally get back to work after 8 years of not working. I only worry about who will hire me since my work history is so wide. Though I no longer deal with the constant bleeding I still do have to worry about my Ileostomy. The constant reminder of having a bag and the worry if I am going to leak today and such.

    Even if hired I will still be having appointments to attend and that is something that will interfere with work so that is another battle to fight.

    Do hope your situation gets better. The feeling of being loss in this battle can take it’s toll. Going to UC sites does help because you find you are not alone and others have been where you are now and can likely give you the answers you seek or simply lend a ear.

  4. Tracy Perkins April 30, 2014 at 5:10 pm #

    My advise since you are already anemic, take iron!!! From bleeding so much for months, I had to have a blood transfusion , almost died. Take iron!!!

  5. Goldie April 30, 2014 at 8:26 pm #

    ugh, I feel for you!
    Keep searching until you find the cure that works for you. Be patient with the process of healing and believe that it will come to a better place !
    There is a G-d in the world – pray!
    Personally dealing with alot of similar stuff- THIS MORNING i just gave myself the first dreaded Humira shot…which was a lot better than I anticipated!
    I also recently just made my way to a blood chemist- to try to figure out a way to end this horrible weakness and fatigue – you can look him up – Dr. Brewer in Vegas – he gave me some advice…but told me that I must be consistent and patient to get the desired results.
    I am also told that royal jelly should help with the weakness (though its not kosher)
    Sending you all the strength you need to keep strong and stand the winds of the storm!!!

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No matter what, colitis flares don't last forever, don't forget it:)