Newly Diagnosed And Struggling Emotionally

Meet Kris:

I’m 24 and was diagnosed with ulcerative colitis in August 2012. I included more detail below but essentially I have been struggling emotionally to cope since my diagnosis.

Some more about me:

I enjoy playing, coaching and umpiring netball and love spending time with friends. I also enjoy cooking.

Symptoms:

Currently have abdominal pain, which varies in severity day to day with no apparent triggers. Other symptoms have settled since starting Remicade.

My UC Story:

I was diagnosed in August this year after spending 2 weeks in hospital with symptoms. I was being treated with antibiotics for suspected gastro and as you can imagine that wasn’t helping. After telling my medical team “I’m not getting any better” several times and getting no where I had a bit of breakdown and they finally decided to do a colonoscopy and hey what do you know I have UC! Then I spent the next 2 weeks in hospital while they fiddled with my medications. I was getting worse and continued to have people say “it will take time, you will be fine”. I knew this was not right so again I cracked it and they did a second scope and found I wasn’t getting better (but hey what the hell would I know it’s only my body). I started Remicade and 3 days later my symptoms had calmed down enough for me to go home.

I had generalized anxiety and depression prior to UC and that has just become more intense since my diagnosis. Especially considering that my family are not coping at all. I can’t tell then when I feel bad because they don’t know how to react and I have had several fights with my dad because apparently the amount of medications I take is “ridiculous”. I now take them in my room in private so as not to rock the boat.

I spend over $500 per month in medical expenses not including the time off work for appointments and treatment. I’m lucky they kept my job open for me for so long.

I also gained an insane amount of weight since leaving hospital due to prednisone, which I’m finally off now.

I’m slowly starting to come to an acceptance about my UC but it’s been a bit of a struggle.

Medications:

Mesavant
Imuran
Remicade
Vitamin D
Vitamin B6
Iron infusion in August

written by Kris

submitted in the colitis venting area




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14 Responses to Newly Diagnosed And Struggling Emotionally

  1. Marie January 1, 2013 at 10:36 am #

    Hey! I was diagnosed in August as well. I am also struggling emotionally to deal with this. (Not sure if it’s the prednisone that makes me cry or having UC.). I didn’t have to be hospitalized but I am on my second round of prednisone, so my weight gain has been terrible. This time as soon as I started tapering the symptoms came back. I started azathioprine today. It is difficult to deal with the unknown with these meds as well as the symptoms themselves. I am a stay-at-home mom, and I have had to leave my son in his pack n play too many times because of this disease. I am sorry you are going through this. Know there is someone else who is newly diagnosed who feels your pain. I am glad they finally got you treatment. :)

    • Kris January 2, 2013 at 5:44 am #

      I don’t know how you manage with a kid as well. I have good and bad days, the day I wrote my post was a bad day. I found I was much less of an emotional wreck once I was off the steroids. I did get symptoms again but then Remicade helped. It would take some convincing yo get me on Prednisone again.

      • Marie January 2, 2013 at 8:12 am #

        Kris,
        It is hard with a child but I would have a hard time working (I was a teacher) too. I am so ready to be symptom free. You are right. There are good and bad days. Supposedly it takes a couple of months for azathioprine to work. :( I hate prednisone…I wish I could wear a sign saying I was taking it so people would understand. :) I wish you the best.

  2. Mason January 1, 2013 at 11:22 am #

    Hey Kris! Im so sorry you are having a hard time with the UC. It is such a tough disease to handle, and it makes it so much harder with family issues. But this will get better. I am 23 years old and I had to have emergency surgery to have my colon removed, and after spending a month in the hospital I was greeted with all my belonging in my car and no place to live…my fiance couldn’t handle the disease, so just threw our future away. But we are all here to help, and pick you up on those bad days. Life is beautiful man, and there is nothing UC can do about that :) If you need anything at all let me know.

    • Kris January 2, 2013 at 5:51 am #

      That sucks about your fiance but sounds like you might have dodged a bullet there. But yeah I have good days too. I’m lucky I have an awesome group of mates who refuse to let me feel sorry for myself.

  3. Kathy Prieto January 1, 2013 at 5:44 pm #

    Hi Kris
    My husband has colitis and daughter with non diagnosed abdominal stuff. It is very frustrating and sometimes a life long thing. My husband was barely 100lbs when he was discharged from the hospital still with severe symptoms. Things that helped turn him around besides his 5 cigarettes a day were: VSL#3 DS packets(probiotic- this is prescription strength covered by most insurances) or u can get non prescription strength VSL from Costco or ur local pharmacy. Also he had 1 a day life extension whey protein powder shake with coconut oil added(can work up to 3 TBS a day). We also used glutamine (helps with gut healing) in the shakes. He ate a ton of banana almond flour SCD muffins. Be careful with the whey protein shakes- some have a bunch of junk and sugar added. Remicaid was strongly advised for husband but he was able to not go there with the above. Maybe it will help some of ur symptoms. We r firm believers in VSL and cigarettes here. We have an insurance plan that did not cover the hundreds of $s of medications that did not work- and these things did work for us. Good luck.
    Kathy- wife and mom to husband and daughter with UC and gut stuff

    • Kris January 2, 2013 at 5:46 am #

      It took a huge effort for me to quit smoking a few years ago so I’m apprehensive about nicotine therapy, though I have heard good things. Robotics do help though.

  4. Bethany January 2, 2013 at 6:50 pm #

    Hey Kris,
    I feel your pain. I’m 22 and I was diagnosed in October after getting really sick really fast and spending a grand total of 3 weeks in the hospital and the strong threat of needing emergency surgery. I have been struggling since with good days and bad days and pretty severe depression. Right now I’m playing the medication round about game because my body has rejected everything we have tried and now waiting to get approval from my insurance company to start Humira. Fingers crossed we get good news by the end of the week but I am still at 40mg of Prednisone a day and fighting all of the many symptoms it brings. Keep your head up and I hope things get better soon. There is always a light at the end of the tunnel somewhere. It’s just keeping your eyes open when it appears.

    Bethany

  5. joanna January 2, 2013 at 7:10 pm #

    i hope the remicade continues to help you, kris. it helped me while i was on it. i’m waiting to start humira as SCD/paleo and supplements are doing the trick unfortunately. i still have horrendous cramping. i know what you mean about the anxiety. i am literally terrified of leaving the house because i don’t want to have an accident. granted, i’ve never even had an accident outside of my house but the thought of it keeps me inside. i can’t wait to feel better again.

  6. Youness January 7, 2013 at 4:33 am #

    Hey Kris !
    all I can say is live life as well as you possibly could !
    most UCers have experienced depression and anxiety , and maybe lots of us think anxiety and depression caused our UC ..
    I for one narrowed it down to 2 causes :
    – taking lots of OTC meds growing up ( that’s why UC is mainly present in developped countries)
    – Going through tough times personally and increased stress

    just look around , you see people who are struggling everyday with worse predicaments ..
    yes there is many things you can’t do as before .. you can’t be as active as before .. but still , UC does not affect every single aspect of your life if you don’t let it .. you can still be a smart person , enjoy movies , books , and manage a job where you can be very productive in spite of UC ..
    be strong !

  7. Single Parent January 8, 2013 at 8:22 pm #

    Hello, Kris
    I am so sorry that you are dealing with this but let me say that you are not alone at all. I was recently diagnosed in July of 2012 after dealing with months of horrible symptoms. I am a single parent of a 5yr old son so I understand your pain. I started out on Asacol and it helped me but soon as I was changed to Lialda my symptoms returned with a vengeance. The prednisone helped me alot but my GI felt that he wanted to decrease it because it “is not good to take too much of it”. It seems like that made my symptoms even worse. Now I am on Imuran 50mg, 3 Lialda, Prednisone 40mg, 2 Iron, and 2 Vitamin C a day. I understand what your family means when they say you are taking too much medicine. Sometimes I feel that way also. I have to have my blood monitored every 2 weeks and so far my levels are dropping. I just got a call from my GI telling me to come into the office in the morning because my latest lab report said my blood levels are dangerously low. They are talking a blood transfusion and maybe Remicade. I am scared to the point that I am delirious at times. The Prednisone has me wired up and the blood loss has me tired. There are times where I don’t know if I want to go to sleep or take a jog around the block! I just want to let you know that you are not alone and I am here for you if you want to vent or cuss or cry or whatever else there is to do. Chances are I am doing it also. I hope you get better!

  8. Single Parent January 8, 2013 at 8:23 pm #

    Kris,

    I forgot to say God Bless You!

  9. Jessica from Ohio
    jessica January 21, 2013 at 4:54 pm #

    Kris,

    I am sorry to hear that you are having such a tough time with this but I can totally relate to you with the emotional roller coaster that it puts you through with the meds and UC itself.

    It is hard to talk to other people who have no clue what UC does to you and then adding meds like Prednisone on top of it. I had that same problem. I was diagnosed in April 2012. This site is a true blessing being able to just rant about side effects to meds, symptoms of UC and just talking to others that can relate. I joined this site and another one which I didnt get on too much, but there was a story I read on it about a girl my age (28, well 29 now) that talked about how she was reacting to prednisone. I at the time thought I was losing my mind. Her openest about how she the med made her feel, made me realize it wasnt me , it was the meds!
    I also am on Facebook and joined I have UC there too…. I have added others that have UC as friends and even spoke to some on the phone. It really helped me get through my rough spells.

    You are not alone, and there are some really great people on this site. If you reach out to them Im sure that they will respond and help in any way possible.
    Wish you the best!
    Jess

  10. Emily Kate
    Emily Kate February 2, 2013 at 7:04 pm #

    Kris,

    I’m so sorry to hear you are having a difficult time with your UC. I am 25 and have dealt with UC since I was 21. I too have my days where I struggle to deal with the disease. I also am on Remicade. I hope that Remicade continues to work successfully for you! It has helped me a lot. I still have occasional flare ups, but not like I did prior to Remicade. I was hospitalized for 1.5 weeks with the threat of surgery, but thankfully this time, I didn’t have to go through the surgery. Prednisone is something I would have to seriously think about getting put back on again. I had a lot of tough times on it. I gained 50 pounds in what seemed like days. I was constantly hungry, very emotional, and so upset in general about being dianosed with a disease I didn’t know much about. It took me two years to slowly take the weight that I gained off. I finally feel almost back to myself after losing the weight, but UC definitely takes a toll on us at times. Keep a positive attitude as much as possible! I wish you the best of luck in your journey! Good luck with the Remicade! I had my 3-year infusion anniversary this past Friday.
    Emily

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