Newly Diagnosed and Feeling Lost

Kayla Colitis Idaho

That’s me with my dog!

Meet Kayla:

23 year old female in Northern Idaho, originally from Oregon. Gluten Intolerant diagnosed 09. GERD diagnosed 05. Fibro diagnosed 2012. Diagnosed with UC December 2012.

Some more about me:

I am a full time barista, it’s my life. I will own my own shop one day. I love photography. Most people would describe me as spontaneous, goofy, friendly, loud, random. I was a three sport athlete until I graduated high school in 2008. Gymnastics, Cheerleading, Volleyball, Tennis, Dance, Swimming, etc. I did as many sports as I could until I started getting more ill in 2009.

Symptoms:

I am currently in my first flare. I have blood with every BM, intense and random burning sensations in stomach, canker sores, tiredness, body aches, tension head aches, bloating, bladder pain, and extreme tenesmus.

Newly Diagnosed and Feeling Lost Right Now

I came down with a horrible cold in September 2012, shortly followed by a respiratory infection that kept me awake at night dry heaving. I noticed blood on my toilet paper Oct. 24th 2012. My mother and friends told me not to worry, it was most likely an internal hemorrhoid. 10 days later, and still bleeding I went to quick care, where the doctor I saw did a physical “feel” for a hemorrhoid. Tested for blood (which was positive) and asked me many questions. She told me a colonoscopy would be necessary.

A week later I get my colonoscopy done by a surgeon (no gastro’s in my town). I left super drugged up with no papers or anything. The doctor calls me the next morning and leaves me a voice mail. “umm you had some irritation, take some ibuprofen.” WTF I’m bleeding out of my A*s, no idea from where, and this guy tells me nothing.

the following week I follow up with the lady Doc. that referred me to him. Since my colonoscopy I started passing mucus, puss, and small tissue like stools. I ranted to her about how poor the doctor was and that I felt frustrated and sad and scared. She was soooo very kind and understanding. She ordered a blood test to make sure I wasn’t losing too much and referred me to a gastro 40 miles away. She then pulled up my “results” that read, multiple ulcers up to 8 inches inside rectum. biopsies came back non specific. NEWS TO ME! “take some ibuprofen” a blood thinner? really?

Three weeks later I meet with my gastro for the first time. His first words were “so i’m dong a follow up on a colonoscopy I didn’t do?” I could tell he was as frustrated as I. I quickly interrupted him and told him I had had a bad experience, that the surgeon told me to take ibuprofen, and that I was getting worse. his facial expressions quickly changed and he started to take tons of notes on everything I said. he put me on a prednisone taper for 20 days. 40 mgs and down. he ordered protien reactive blood tests for crohns and uc. I noticed small improvements from pred. but I never stopped bleeding. I met with him again a month later. Still bleeding. He was sad that the pred didn’t work, but sadder to tell me my UC blood test came back positive. I asked him 100 questions about it, I had already new that’s what I had, but it was nice to finally have an answer, or a name to put too my symptoms. I develop new ones every day it seems. I see him again on Feb. 4th 2013.

Colitis Meds

I have only done a 40mg prednisone taper, and it didn’t work at all. Made me angry, uptight, and irritable. I had panic attacks and mood swings. I will never take it again.

written by Kayla W

submitted in the colitis venting area




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11 Responses to Newly Diagnosed and Feeling Lost

  1. Caroline
    Caroline February 17, 2013 at 11:11 am #

    Hi Kayla – thank you for sharing your story. Getting the right diagnosis seems to be half the battle! How are you feeling now, and how did your follow up appointment go if it’s already happened? Hoping that you find some relief soon!

    Caroline

  2. bev February 17, 2013 at 4:31 pm #

    Hi kayla,

    I believe that you will have your own coffe shop someday! Shoot for that.

    I have had UC for 15 years, and it took me along time to learn (about 14 years) that meds don’t really work. Some work for awhile, but they all seem to eventually stop working at all. It’s the nature of this condition. The thing to do is to try and find out what you can do, naturally, to manage it yourself.

    I am currently on NO meds at all. I take a 50 billion strain probiotic (get one that is specifically recommened for UC…ask a vitamin/supplement store clerk). Take the probiotic first thing in the morning, with water, and then try not to eat for a hour after. If this is not possible, get up at 3 or 4am, take it, and go back to bed. This gives the probiotic the best chance to work for you. I also recommend fermented L-glutanmine powder. What is that? It actually repairs the mucosa of the colon. It has a grainy taste, so I mix it with a bit of cranberry juice and drink it about an hour before lunch.

    I also take two natural anti inflammatories…vitamin D (most of we UCers are lacking it it and we don’t know it, so 5000 units should be taken for at least a couple of months, and then you can cut that down to 1000 or 2000), and a 4 mg capsule of astaxanthin. That is a powerful little anti inflammatory as well. You can look it up online. I take those two things right after I eat lunch, or supper, because they are best absorbed with fat.

    I hated the meds. They all made me feel like crap! My body does not like medication, I have learned. The things that I take now have NO side effects at all! I’ve been in ‘remission almost a whole year now. It’s fabulous to feel good again. It took less than a week on the probiotic for me to feel better, but it could be different for you, however, your UC isn’t too far up your colon yet according to what you said, so it could work just as fast.

    The thing is, after this bad bug that you had…did you take antibiotics? The use of those can be the kiss of death in some of us. I obviously cannot tolerate antibiotics…I’m sure taht is some of the reason that I got UC. Plus, I also took accutane (a drug for acne) 4 times in the 1990s. Very bad…if only I’d known that UC was a possible side effect of it. That;s why we need to take probiotics, and help build our flora back up!

    Try it…none of these things can hurt you and they cost less than most of the UC meds do…except for that nasty prenisine…it’s actually a cheap drug! Very bad for you, but cheap…

    Cheers and welcome to the site…you will get alot of tips and advice…weed out the crap, and try what you think may work for you. Take control of this thing early…not like me… I did whatever the doctor said for 14 long agonizing years…I can’t get those years back, but you need not let that happen to you! There is so much new info out there on UC now!

    Bev
    :)

    • Tina February 17, 2013 at 7:06 pm #

      thank you Bev for this valuable information to Kayla. It’s very important and valuable. I am sorry for your suffering and so happy you are in remission. Bless you.

  3. bev February 17, 2013 at 4:32 pm #

    L-glutamine…sorry for the typo

  4. Kayla W
    Kayla February 17, 2013 at 5:22 pm #

    Thank you for sharing. Since I typed up this post a fee things have happened. I started to feel a little better after my diagnosis on dec 31st. I went and picked up boswellia capsules and probiotics. I stuck to a blan diet and drank tons of water and herbal tea. Two weeks ago it took a turn. I began passing darker blood, sometimes only blood. Was very weak, in a lot of pain etc. i went to quick care where they checked me over and said i was okay on blood but should take it easy. Two days later I went to the ER. I was beyond dizzy. Going to the bathroom 30-45 times a day and passing blood. They filled me up with fluids and treated me very well. The internal medicine doctor that was on call said he thinks its crohns because the kanker sores and stomach burning arent typical for colitis. He said i should go back on prednisone for the time being to get this under control. And so i did. Two days later was my follow up with my GI. He put me on sulfasalizine and prednisone. 10mg’s twice a day. I have improved about 30% since my trip to the ER. But ive officially been bleeding for three months, three weeks and three days today. My energy level is better and my BM’s are usually semi solid but there is still always old and fresh blood with every BM. I still take my probiotics. I have researched alot of batural remedies and im willing to try them all. I have my first ever accupuncture appointment this wednesday. Hoping to find stress management. I realize western medicine isnt the best for UC. Im willing to do whatever it takes. Im so tired of bleeding. Its ruining my life and ruining some of my relationships. Im not the kayla i used to be. I dream of better days and know they will come. But how soon? Im interested in any natural remedy anyone has had success with. Thank u all for your replies.

    • Chris from Massachusetts February 18, 2013 at 10:37 am #

      Hey Kayla =)

      What works for me is written in Breaking the Vicious Cycle:

      Protein is the easiest on your colitis, Fats are OK and Carbohydrates are the hardest.

      I follow that rule and I am fine:)

      Good Luck:)

      If you get constipated (it happens!) just give yourself a warm salt water enema. I give myself one every morning.

    • bev February 18, 2013 at 12:27 pm #

      Kayla…the blood is definitely the most worrisome symtom of UC…or crohn’s. Isn’t is awful to look down and see blood? I hate it and even after 15 years, it still freals me out. There’s just somrthing not right about bleeding out that end! My poor husband would pass out if he had UC, I swear!

      I hear what you’re saying about western medicine really doing us no good in treating UC. So very true! Keep trying natural stuff to see what works for you…have you read about extra virgin olive oil? Graham, a fellow UCer on here swears by 3 tablespoons a day…or even more if you need more…others have tried it with some positive results…you never know what may work for you….hang in there and keep trying. I’m sure you’ll find your ‘thing’ eventually!

      Cheers
      :)

    • Caroline
      Caroline February 18, 2013 at 4:45 pm #

      Ugh – I totally get it. Nearly 4 months of bleeding – that is awful and the worst feeling. I am so glad you are feeling at least 30% better and I hope it continues. I am working to come out of my first flare ever myself and I’m so impatient. I keep reminding myself that it took me a while to get this sick and it will take me a while to get out of it. I hope that the probiotics and dietary changes work for you – acupuncture has been very helpful to me and I hope it is for you as well. Best of luck and hang in there!!

      Caroline

  5. joanna February 22, 2013 at 7:42 pm #

    hey kayla. just wanted to say hi and hope you are doing a little better.

    i just got out of the hospital last week for C. Diff and that was hell. i was bleeding so much. my hemoglobin got down to 6.8 (normal for girls is 12-14). i got units of blood while i was there. bleeding is definitely the scariest symptom of UC. i absolutely hate it. as long as you aren’t needing blood transfusions, then you’re not so bad off. i’ve had 3 since november and i don’t want any more!! i just don’t know what to do.

    i’m 23, too, but i’ve had UC since i was 17. it definitely ruins a lot of things in your life and really destroys relationships. just keep trying to find ways to help your condition. everyone is so different with what helps them.

  6. Kayla W
    Kayla February 24, 2013 at 10:34 pm #

    Thank you everyone. I am now doing L glutamine powder, aloe vera juice, omega 3, sulfasalalzine, boswellia, and prednisone. today has been the best day in a few months. My BM’s were so different (in a good way) and i’m just really holding onto this improvement. I want remission in my near future!

  7. Kayla March 9, 2013 at 8:13 am #

    Hey Kayla,my name is Kayla as well.
    Cute doggy btw! I have UC as well. On predisone
    atm and it’s going pretty good. Moon face ya
    and some redness at times but other than that all good.
    I’m also on Remicade infusions which are going
    pretty good as well. I really hope your bleeding
    goes away along with the puss! I’m not on any
    real special diet eat whatever in small portions.
    Not suppto have caffine but do it very sparingly.

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