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I Have UC and I’m Scared

Tara B f mIntro:

Hello, My name is Tara, I am 29 years old. I was diagnosed with ulcerative colitis in November of 2013. I live In Arizona with my family, and love living here!

Some more about me:

I grew up in England and moved to Arizona when i was 12 years old. I have a 9 year old daughter and have been married for 9 years. I love being a mom. I work part time at a child care and have been doing that for 7 years now. I forget everything and always say “I forgot.” I love to laugh and be around people I love!

Symptoms:

I currently have no blood.(Usually blood is off and on) I have been constipated. It’s strange because everyone with UC says they go all the time, but I wish I could go more sometimes. I get stomach cramps occasionally, sometimes I feel it in my back/left side, not sure if its connected.

Story:

I am an ex-smoker. I quit smoking in June of 2013 and started to see blood in my stools a few months later. I didn’t go to the doctor at first, because it was only when i wiped and I thought it was a hemorrhoid. So when I finally went to see the GI, they recommended doing a colonoscopy and that’s when I found out I have UC. I learned that ex smokers find out they have the disease, and trust me I have wanted to start smoking again so many times, but I think I need to try other ways. (that’s just the easy way out, for now) I was very angry, as I thought I was doing something healthy for my body and now I have something else to worry about.

I was diagnosed and thought it was the end of the world. I was so scared. I literally had chest pain from panicking so much. I was also so angry with my body and the world. I am already a hypochondriac and paranoid person. So of course my first thoughts were “I’m going to die” and “I’m not going to see my daughter grow up and get married” and automatically thought I am going to have to have surgery. Of course, I cant see into the future, but I have hope since I found this website. So many of you have given me ideas of things to try and best of all, HOPE!

My doctor, like mostly everyone here, doesnt agree with diet being an issue. I am wanting to start a new diet to see how it works. Like the SCDiet or gluten free diet. Im not sure, I know no matter what I decide to do, its going to be a tough road. How did you do with changing your diet? Cutting out those foods you love so much? But I know in the end its for the best. I was thinking of trying some probiotics. Has anyone tried any or can recommend a brand?

Medications:

I am taking Delzicol right now 2 capsules 3x a day. That’s all I have tried, but I just went in last week for my second colonoscopy and they said the medication wasn’t working. So he said to continue taking it and prescribed me hydrocortizone suppositories(which I haven’t started yet because prior authorization is needed from the ins. company.)

written by Tara B

submitted in the colitis venting area





28 Responses to “I Have UC and I’m Scared”

  1. AdamJanuary 27, 2014 at 6:12 am #

    Hang in there Tara!!!

    You’re gonna be alright, its only been a couple months since your diagnosis, so for sure this whole new thing (UC) has to seem super strange still. Sure took me a while to get used to “having a disease…”

    But you’ll be back on a roll soon, for sure.

    I think you’re right on to start thinking about diet changes. Its helped me for years now.

    As for probiotics, we did a survey a while back on proboitics I think you should check out here:

    http://www.ihaveuc.com/129-person-ulcerative-colitis-and-probiotics-survey-results/

    Lots of perspective from over a hundred UC’ers on them.

    Best,

    Adam

    • Tara B
      Tara B.January 27, 2014 at 2:26 pm #

      Thanks so much Adam! I have started probiotics and am starting to have regular BM’s. At least more regular then before! Thank you for your positive words! I am feeling positive as I move forward with whatever I decide to do next, diet, more supplements, etc. I am in the middle of your book, and I appreciate you sharing your story and making this website! Your awesome!

  2. HEATHEN HOLIDAYJanuary 27, 2014 at 8:15 am #

    OMG, I am so sick and tired of hearing these doctors say that diet has nothing to do with it. That’s a flat out LIE. I have heard that from 3 GI doctors since I was diagnosed in 2005 with left-sided UC.

    Here’s my current dietary regime… single ingredient foods. Meat… which I am trying to not eat so much of because it takes a lot to digest, vegetable and fruit. Lots of eggs. I eat NO dairy, NO grains, NO sugar… try to lay low on the oils. Try to buy organic, non-GMO when I can. I struggle with coffee and I just quit alcohol after my tests that it does, in fact, make me bleed no matter which kind I drink. I steam everything to make it wet and juicy instead of baking it which sucks the moisture out. I need to drink more water, that’s important and a struggle for me.

    Vitamin D seems to be a huge help… a big, fat dose of it, not the GOV recommendations on the bottle… and funny now they are trying to say on the news that Vitamin D doesn’t do anything. LIARS!

    Basically, if I cheat when I am going through a flare, I pay for it. The whole trick is discipline and every day is a fight and a battle to not give in and take a bite of a brownie. I used to love to go out to eat, but not anymore. I can’t trust the ingredients and the temptations to eat that good ole’ comfort food (politically correct for junk food) is too great.

    I use supplements, medications, I hit it from all directions, but the goal is to get OFF the medications and control it through diet. It can be done. I’ve read other people’s success stories on it.

    Keep up the fight, and it’s perfectly ok to swear at “God” and be angry. If anyone tells you that disease makes you stronger and a better person, etc., etc.. just slap them :)

    • Tara B
      Tara B.January 27, 2014 at 7:02 pm #

      Heathen, I hear you about the water! I try to drink more everyday but I still dont think its enough. I stay away from sodas for the most part and have one half glass of cran-apple juice a day with dinner. I started the probiotics and started feeling better after a few days, I take vitamin d3 everyday because they said mine is low. I stay away from seeds and nuts and for the most part I havent seen blood in a few weeks. I am really thinking of trying the scd diet, like they say on pecanbread.com or scdlifestyle.com. they do it in phases and they say thats the best way to heal your gut. I really want to try to heal it. If it doesnt heal me but makes me feel so much better I will be happy. But I have to try right?

      • HEATHEN HOLIDAYJanuary 27, 2014 at 7:29 pm #

        Hi Tara,

        I have been experimenting with all kinds of diets and foods for over 3 years now, you just gotta keep trying until you figure out what’s working and what doesn’t. Keep in mind you can also modify the SCD if you need to. Like I said, I don’t eat any grains now. NONE. The most frustrating thing for me is that maybe one day something will agree with me, and then another day I will test it again and BAM! Noooo good.

  3. MykJanuary 27, 2014 at 10:01 am #

    Well, the obvious go back on nicotine. Smoking is protective of UC but of course you don’t want to smoke. If you’re like me one cigarette would have you back to full time smoking instantly.
    Nicotine brings remission when used with 5-ASA by almost 50% compared to placebo. Nicotine without smoke is not addictive and not a huge risk. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2014383/
    I use ecigs. I’ve been tempted to switch to the patch because after 2 years relying on the addiction to smoking to give me enough nicotine isn’t reliable.

    After my scope I was on Asacol and extremely low nicotine because I had a Crohn’s diagnosis. I still bled. After the upper and a UC diagnosis I got the OK to add nicotine back in. I went back to what I quit with and then worked up to a higher mg. I stopped bleeding.

    SCD cuts out a bunch of my safe foods and allows a bunch of flare foods for me. About all you can do is try but don’t get too caught up in declaring food off limits forever because things change. What I lived off in my 20’s gives me nothing but problems now and what I avoided in my 20’s is what I need now. It’s not a one size fits all disease.

    • Tara B
      Tara B.February 3, 2014 at 3:40 pm #

      Myk,
      What is 5 -ASA? I have been seeing that a lot, and wasnt sure.
      I currently use the e-cig, but I have recently learned that it doesnt have as much nicotine as they claim, so I dont know. I use mine sometimes when my mind starts trying to talk me into starting up again. I don’t want to though. I have heard that the patches work great on some people, but I think I still need the feel of smoking and the e-cig gives me that. I am going to try the scd to see if I can heal my gut. I dont want to live like this forever or face surgery. I would rather try all of my options.

      • MykFebruary 7, 2014 at 6:11 pm #

        5-ASA is mesalamine.
        I quit with 11mg ecigs. I had to increase to 18mg to stop bleeding while on mesalamine. I couldn’t handle 18mg when I first switched to ecigs and had to work up to it, so there must be some that gets in the blood.

        When I was thinking of switching to patches I figured I’d keep the ecig and use with with 0mg nicotine.

        Good luck finding a diet and not smoking.

  4. zinnat araJanuary 27, 2014 at 10:25 am #

    hi tara……i’ve uc and i’m scared too.sept.2013..i came to know that i’ve this disease..i was shocked..no meds were working…then hospitalized.. now better by the grace ALLAH.having joint pain .heathen’s advices r very helpful.how should i take the vegetables can u make it a little clear HEATHEN.my life has been changed a lot .i am fighting with myself and fighting with uc.

  5. Donna G
    Donna GJanuary 27, 2014 at 10:32 am #

    I suffered chronic constipation for several years before presenting UC symptoms. I now know that was undiagnosed IBS. I am currently in remission but have been eating SCD for 3 months and I feel better then I have in 17 years. I think I am finally becoming free of chronic inflammation. For me gluten free didn’t do anything, I needed to take out sugars and other starches. Interestingly I haven’t had a lot of cravings and feel very satisfied after I eat. Social things are harder but I just explain and people have been very supportive actually, and I just pack some food if I think there won’t be anything that I can eat. In addition to taking a probiotic I think that eating probiotic foods has been really helpful to me as well. Try Bubbies pickles, they are wonderful! Seems like a lot of people drink a little extra virgin olive oil, sounds great for constipation doesn’t it?

    Donna

    • HEATHEN HOLIDAYJanuary 27, 2014 at 10:38 am #

      Donna!

      My UC started as a year or two of total constipation… then a year or so of everything I ate turning into diarrhea, then the full blown UC diagnosed in 2005 with all the symptoms of blood, fevers, joint pain, urgency, etc., etc. I would love to be constipated right now. LOL.

      Can I ask you something about the starches? Someone told me recently I need to cut out on sugary fruit and starchy vegetables, too. Further reducing my already shrinking list of foods I can eat. What do you suggest for this, or what vegetables and fruit specifically do you stay away from that have high sugar and starch content?

      • Donna G
        Donna GJanuary 27, 2014 at 1:19 pm #

        Hi Heathen Holiday,

        I sent you a reply but I don’t know what happened to it. If you want to e-mail me you would be welcome to, then we can discuss further. gagnerdonna@gmail.com

    • Tara B
      Tara B.January 27, 2014 at 7:05 pm #

      Hi Donna,
      Seems like you are having success with what you are doing! Are you taking any supplements? Besides probiotics? I havent heard of bubbies pickles. and I am going to try to put more extra virgin olive oil on some veggies, I keep hearing this is good for you.

  6. DarleneJanuary 27, 2014 at 11:35 am #

    Tara,

    While your UC symptoms seem unusual there are other UCrs that deal with constipation. I have an acquaintance, an 82 yr old woman, that has UC that presents with constipation. Drink lots of water. Also, using a small step stool in front of the toilet to place your feet will put your body in a more natural position for elimination. These steps can be found to order and purchase on the internet if you would rather have one that is specifically made to fit around the base of the toilet. If you have time then to stay in the bathroom for awhile place your feet on the stool and let gravity do its work. Here’s a link to view the stool on the web http://www.squattypotty.com/. This changes the angle of your body and perhaps gravity will help you eliminate. Also, one day I saw on the daily TV program “The Doctors” another suggestion. There is a hard foam roll that you can place against your abdomen while you are on the toilet. Use the roll to massage your abdomen and that can stimulate elimination. And I’m sorry I can’t find the link on the web for this item. Or you could try massaging your abdomen with your hands. Also, try taking a small amount (1/2 tsp) of either wheat bran or wheat germ or both. It’s like swallowing sawdust — but (very important) follow with lots of water. I use to give this to my young children when they needed help. But drinking lots of water after taking the wheat germ or wheat bran is KEY to avoid any cramping — but this is very effective.

    Good luck with finding good natural treatments to manage your UC. A high fiber diet will also help – lots of fruits and veggies.

  7. bevJanuary 27, 2014 at 2:29 pm #

    Here is your post Tara!

    You already know the probiotic….I know things are better since you stated them.

    Keep us posted girl!

    :)

    • Tara B
      Tara B.January 27, 2014 at 7:14 pm #

      Bev! Yes here I am. I ate a few bad things this weekend, Chick fila, and french fries at another meal. so today my stomach was a bit upset at me. Wont be doing that again. I also forgot to take my probiotic before I ate anything this morning(still getting used to having to take them). I am going to be adding in the l-glutamine this week or next. Fermented right? And whats the difference between getting the powder form or the pills?

      • bevJanuary 27, 2014 at 10:51 pm #

        Ugh….I hear you!

        Yes, you gotta remember that probiotic first thing…lol

        Yes, fermented L-glutamine…I don’t know the difference, if any, between powder and pill…anyone?

  8. ShirleyJanuary 27, 2014 at 2:51 pm #

    Hang in there Tara, we know how you feel and I am like the others if there is a way without medication I am on to it. In 2009, honestly we thought I was on my way out. Eventually I came good for about 6 months and then it all returned. I was on the hard meds again during the crucial time but I gradually took myself off them as soon as I was over the worst. I am very anti hard drugs, there are other ways and you will find what suits you. Now I only take immune glutamine in powder form, 1 teaspoon in small amount of water each day. I keep much to natural foods as I can, avoid sugars and artificial flavourings and preservatives. I had a slight flare about 9 months ago again but I have been good since. You will get past this, best of luck and know we all here are with you.

    • Tara B
      Tara B.January 27, 2014 at 7:09 pm #

      Shirley, I am glad to hear you are better now! I definetley feel so much better since finding this site and knowing I am not alone! My family is here for me but I’m not sure they truly understand. Is the immune glutamine the same as L-glutamine? fermented right?

  9. MeaganJanuary 27, 2014 at 3:28 pm #

    Im 27, been dealing with UC for 5 years now. Stress is something that really makes my colitis go off. I find hot yoga helps to keep me more relaxed and not so stressed. Smoking was probably a big stress reliever for your system, as bad as it is for you, so quitting threw your system for a loop. For me, sticking to a low fiber diet is the only way to keep the blood away along with stress reduction. When I was at my worst, I ate no more than 10 grams of fiber a day. I did this for 6 months and by the end, my system had reset to the point where I could slowly start adding fresh fruit and veggies back in. It is absolutly work to keep the schedule but it totally worked for me. Dedication is the key to surviving ulcerative colitis. I eat bread all the time. Preservatives def can make it worse. Personally the SCD diet didnt work for me because of all the fiber. My system just hates a lot of fiber. Worth a try whichever you choose good luck! When you do try a diet modification, as long as it isnt making life unbearable, stick with it for at least 3 months so you can see the full effects. Keep reading blogs and talk to other people, especially around your age to hear your not alone, whining is totally allowed and you may honestly be dealing with this forever but all of us here are too so we get it!

  10. california karenJanuary 27, 2014 at 5:45 pm #

    tara , I too have uc and it has changed my life; but long story short ; mine turned from blood clots too diariah to constipation. It sucks! do use probiotics. I cant have corn or nuts especially because I also have diverticulitis! but the food thing; ! is all about diet. its hard to tell from day to day whats gonna trigger symptoms; different for all! listen too your own body! plenty water and get some fiber supplements. good luck too you!

  11. umaJanuary 27, 2014 at 7:06 pm #

    Nothing to be scared about Tara. Try the probiotic Garden of life Primal Defense.

  12. Donna G
    Donna GJanuary 28, 2014 at 8:12 am #

    Hi Tara,

    In response to you question I just wanted to tell you a little about what it is that I think is working for me right now. First of all when I’m in a flare I eat differently then when I’m in remission. During remission I am following SCD diet with the addition of oatmeal. But during a flare I cut way back on insoluable fiber. This means that I don’t eat dry beans and under cooked or raw vegetables and salads and things that are harder to digest. I saw in Adam’s video about eating during a flare that he even eliminates honey so next time I will also do that. So during a flare I eat a lot of soups and stews and things that seem comforting and easy to digest. I’ve recently been adding prebiotic and probiotic foods and have been having lots of fun learning to make my own yogurt and saurkraut, kim chi is next! I take turmeric tablets as an anti-inflammatory, cod liver oil, and a probiotic made by yogourmet (when these are gone I’ll look into other probiotics). I think Darlene’s idea of the squatty potty sounds great. Hope that helps. I do believe in eating SCD, things can get really confusing and it gives you a solid set of guidelines, it’s basically just healthy eating.

    Donna

  13. Tim B
    Tim B.January 28, 2014 at 8:31 am #

    I am sorry to hear about your diagnosis, but know that while it may really suck right now, you can definitely get this under control. You just have to be disciplined in your experimentation.

    Start a food journal and try to figure out what sets you off. The SCD works very well for some folks, but I did not have a lot of success with it. When I switched to The BLAND diet is when I finally got my flare under control. Giving up caffeine was very hard for me, but I drink a cup of decaf coffee every now and then which gives me some satisfaction.

    Just be open minded because this thing impacts everyone differently. Good luck.

    Tim

  14. PatrickJanuary 30, 2014 at 7:26 am #

    Can I suggest coconut oil for constipation? Warm it up in a shot glass if the idea of eating solid fat grosses you out or use it for cooking (it has a great flavor and, unlike olive oil, it is stable at high temperatures). I also experienced constipation during a flare (and I have a long history of it). Within a few days of starting on coconut oil I was producing 2–3
    perfect stools a day (4 on the Bristol scale). The fact that my current diet tends to LOW-fibre/high fat may also be helping. Careful not to exceed 1–2 tsps a day initially, as you may end up with the opposite problem.

  15. Juliet
    JulietFebruary 1, 2014 at 12:10 pm #

    Hi Tara,

    Sounds very familiar with the smoking! Every time I quit in the past, major flare! I haven’t smoked for 3 years now and it gets tempting, especially when you are suffering all of the symptoms. But smoking causes horrible nasty diseases such as emphysema. Plus it ages your skin!!

    Except for when I’m in a flare, I suffer from the dreaded constipation terribly. It makes it very difficult to stick to a carb and grain free diet. I have been doing lots of researching as found things like psyllium and flax do not always work. I actually had reaction whilst using psyllium but it could’ve been due to Asacol.

    Apparently magnesium defiency causes constipation. Some supplements can cause diarrhea, which is fine for temporary relief. However, the best way to absorb magnesium is through the skin. So Epsom salt baths and magnesium oil are good. Hope you find some relief and comfort xxx

    • Tara B
      Tara B.February 3, 2014 at 3:49 pm #

      Hi Juliet, Thanks for the advice! The last time I had blood work done they only said my vit d was low. But my blood was taken prob like 3 years ago. My gi doc hasnt requested blood work besides for the medication to check and make sure it isnt messing with my liver or kidneys. I should probably request another blood test to make sure nothing else is affected. Shouldnt that be a given though? I have been doing better with the probiotics and vitamin d supplements. I have been going to the bathroom more.

      Does anyone else get their blood drawn from GI docs request besides for meds? Just curious, or should I go see my reg doc and see what they think?

      The problem is I have insurance through the state for now and the need refferals for everything and need to have reasoning to do certain tests.

  16. TaraFebruary 11, 2014 at 12:08 pm #

    Just wondering what everyone takes for seasonal allergies?? I started sneezing bad today and I am scared to take anything.. like zyrtec or allegra or something… will it mess with me??

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