How #2 Became #1 in My Life

#2 became #1Introduction:

Diagnosed with UC in March of 2005.

Last Colonoscopy was 2012

Hospitalized twice in last 2 years. Both stays were almost a week. The first time I hadn’t been on medication for 7 years and when they did the scope, they could see all the scar tissue in my gut and told me I either had to get over being on prednisone, or they were going to cut out my colon. (AWESOME!)

Some more about me:

I must have some balls (I get it, I am a chic so pardon the pun) because I took up training for a half marathon twice in my tenure with Ulcerative Colitis. It has been a struggle but every mile I conquer without having to use the bathroom is another defeat against this diagnosis.

Symptoms:

After a few too many “fun” football weekends and travel, I started to see the dreaded beginning symptoms we all know and hate so well.

For me, it always starts with the pink mucus and loss of appetite. Then comes the urgency not far behind. I think I caught this mini-flare pretty quick because 20mg of Prednisone has got it back under control within a week.

How #2 Became #1 in My Life

Hi there fellow UCers.

After years and years of taking the advice from blogs; commiserating silently with those who suffered the same symptoms and horror stories, I have decided to give back to the UC community with my story and experiences with UC.

Nothing is easy with this disease, as we all know. I battle daily with decisions that could make or break my progress.
I have been in relationships -in the worst of my flares- in which my boyfriends have seen me drop 70lbs on my tall 5’11 frame.

I still have nightmares about all the accidents I have had over the years and how many pairs of pants/cute panties I had to do away with. Not to mention the embarrassment surrounding smelling up women’s restrooms around the country and the anxiety that comes every time I take a trip with friends about how many bathrooms vs number of people in the room.

But this is the hand we have been dealt. I have been in the depths of the “why me” syndrome and know it is hard to pick yourself up after every accident or every gurgle of the tummy in a quiet room. (I call it the pool party in my intestines, in the worst days)

My saving grace throughout my whole ordeal has been my mom and keeping myself constantly educated. (Even when you think you know it all) This includes (and I cannot stress enough) DIET, DIET and DIET!!! It is all about catering this disease to what works for you.

Every time I flare, I am reminded I am not invincible and every action I make has a consequence. It is the reality we live in but knowing there are others suffering, makes me want to share my knowledge and help those to not feel they have been handed a life sentence.

Medications:

I am currently on 4 tablets of Lialda after switching from Apriso. I was nervous about making this change but I guess they both act the same according to the Doc.
No side effects with either for me.. AMEN! I did not have a good experience with Asacol years ago.
I was made to make the switch after consistently taking Apriso and still flared BADLY this Spring.
I also just went back on Prednisone (20mg) this past week. I split my dosage (10mg morning/10mg evening) to lessen the homicidal effects. :)

written by Sam K

submitted in the colitis venting area




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12 Responses to How #2 Became #1 in My Life

  1. Adam
    Adam December 4, 2013 at 5:19 am #

    Sam,

    Thank you again for sharing your story. It’s a crazy hand we’ve been dealt, and if everyone takes the mental approach you’re talking about…I think we all will benefit. Thanks so much for sharing, and I wish you the best in getting past the symptoms real soon!!!:))

    -Adam

  2. Mariel December 5, 2013 at 9:31 am #

    Hi Sam!

    Thank u for sharing ur story! I am currently also in 4 pills of lialda And 10 mg of prednisone as well as probiotics, vitamins, frolic acid, and Chinese herbs. I’ve had a hard time cause I’ve been in prednisone for the past 6 months. I was only diagnosed 10 months ago and it’s been a nightmare since I’ve been flaring the whole time. I am only 23 and u can imagine how hard it’s been and how much it has changed my social life. I wanted to ask u about ur diet, since u stressed it as being so important. I’ve been on a gluten free, dairy free, sugar free diet but I sometimes cheat and honestly don’t think it works since I’ve been flaring for a whole year almost!! Any tips?!
    Hope all is well!
    Mariel

    • Sam K
      Sam K December 5, 2013 at 4:48 pm #

      Hi Mariel.
      Thanks for your reply! I have never been on Prednisone that long and have heard it is BAD to be on it for long periods of time. I would ask your Dr. if you should maybe up your dosage again if you are still flaring on 10mg. I was on 20mg for a minor flare and they already started to taper me after 2 weeks because I saw results after a week.
      What symptoms are still really bad for you? Urgency? Blood?
      I am so sorry you were diagnosed so young. I was only a few years older than you when I started to see my symptoms. They started like IBS and only got worse. Plus, that is a hard time in life because let’s keep it real, 23 years old’s like to party!
      I couldn’t give that up in order to get myself well, so it prolonged the process.
      As far as diet, I was tested many years ago for my food intolerances. It turns out EVERYTHING I was eating was on that list. Not sure if over eating of those same items made me sensitive to them or whatnot but I cut them ALL out. For me it was dairy, eggs, almonds and a slight allergy to chicken.
      I had eaten these things my whole life with no trouble and then WHOOP, all gone.
      Also, sugar is the devil but I still eat it in moderation. In a flare if you are going to eat it however, you may as well plant yourself on the toilet.
      My diet in a flare is anything you can think of that will be soft on the gut (keeping in mind your food intolerances). I make homemade mashed potatoes and LIVE on those. Use soy milk and some seasonings and maybe a little bit of butter to taste. I also like homemade chicken soups and sourdough bread sits really well with me. Bananas are also a lifesaver!!! I made lots of banana shakes.
      Please let me know how else I can help you. I am not a Dr. obviously, but flared for 7 years straight, so I was very stubborn about getting help.
      It is okay to cheat sometimes. Sometimes those comfort foods for me were just needed to feel normal and like a human being. Just be mindful of how much you take in and NEVER overeat.
      Feel free to shoot me your diet and I will take a look.

    • Amber December 7, 2013 at 4:01 am #

      Mariel,
      Regarding diet, you have to purchase, and live by with no cheating, Breaking The Vicious Cycle by Elaine Gottschall! Once you’ve read it and decide to completely change your eating habits, I recommend SCDrecipes.com.
      My husband was diagnosed with UC a year and a half ago. He was taking 8 Asacol HD a day with constant flares. He used the bathroom 5-6 times a day, lost weight, felt helpless and even got a little bit depressed I would say. We were tired of his Gastro dr who didn’t seem too concerned even though he was prescribing my husband 240 Asacol HD a month!! We went to Mayo Clinic here in JAX for a 2nd opinion. The specialist told us we should change meds to the next highest level and questioned how many Asacol my husband was taking (he felt it was a high dose, and as it turns out the bottle says no more than 6 a day…lovely!) my husband and I decided to try this diet, and go hardcore for a year. My husband has had NO flares for the past 4 months (we started the diet 4.5 months ago.) As of two weeks ago, he’s 100% med free!!! He has gained weight, feels great and consistently poops 1-2 times a day which is normal for him.
      Hope this helps!

      • Sam K
        Sam K December 7, 2013 at 6:11 am #

        I actually did the SCD diet and it made me more sick because I found out almonds and dairy were a food trigger for me and I was intolerant to them. And if any of you followed this diet, you know almond flour is a huge component. The principal of the diet is good, but I recommend getting some blood tests to see what you can and cannot digest. To be honest, I almost lost my life trying to follow a diet that was making me more sick. I was losing 3-5lbs a week.
        Once again, cater your diet to what makes you feel good vs worse. I still say Bananas, toast and homemade chicken soup are the the most safe.

      • Mariel December 7, 2013 at 9:57 am #

        Amber thank u so much for ur recommendation! I was diagnosed a year a go and literary have tried every diet out there. I went to a Chinese doc and he would only let me eat rice, cooked veggies, fish, and toast and think he made me sicker and I ended up in the hospital. Right now I am trying to tapper off prednisone as I have been on it for 6 months already ;(. I’m trying all possible not to flare because if I do they want to put me on remicade or immuran which me and my parents don’t want to (my parents are very holistic and my dad even questions if I have UC). That is great ur husband is on remission and drug free!!!! Congrats in that! I do have that book my mom bought if for me but I feel that I need some rice or some type of carb to set my stomach or even to feel full. Do u and ur husband have the same problem? Thank u for ur tip! Take care!!!

        • Amber December 8, 2013 at 3:52 am #

          Mariel,
          Are you allergic to nuts? Like Sam said, the diet can be trying if you are. I buy all of my nuts at Costco and Amazon, spending probably $100 a month on them. My husband eats 0 carbs! Not an ounce of wheat, flour, quinoa, rice, NOTHING! Sorry, it’s pure torture, but he feels amazing so he lives with it. I make a bunch of baked goods using almond flour and my husband lives the Midasgold pancakes. He gets super full Because the baked goods are made with almond flour, I must say I really enjoy them too and get super full. I also make him tons of nut butters to eat with apples, peanut butter, cashew butter and almond butter. Also, I make the SCD approved yogurt probably 3 times a week because he eats them everyday. I have an awesome yogurt maker and always make sure he has some! He eats a lot throughout the day. He was also a beer LOVER prior to this diet, now he only drinks bourbon, scotch and Pinot Grigio.
          I have kept a diary of everything he eats daily, how many poops he had that day, was there blood or mucus in the poops, if he had gas an how many meds he took that day. I’ve been religiously keeping track for the past four months.
          When the Mayo Clinic told us food and diet had nothing to do with it and he needed to go to the next highest medicine, we knew we had I try the diet. We had an option to get crazy and follow the book religiously OR continue taking pills, then eventually possibly have surgery on his colon. He decided right then that we would try this diet for a year.
          I have tons of great recipes I can share with you (I tweaked a bunch of Giada and BarefootContessa recipes) if you like.
          My email address is amber.bennett13@yahoo.com if you ever want to know more in depth info, get recipes, or want to chat with my husband. I’m really just his cheerleader and personal chef :)

  3. Rainy December 5, 2013 at 11:44 am #

    Hi Sam,

    It’s always refreshing to hear a positive story as this disease zaps all positivity away. I have been flare free up until 2 weeks ago, it’s only a mild one compared to what I’ve had to endure in the past. I am on the maximum dose of Asacol, the nurse wanted me to take enemas for a few nights, but I decided against it. I seem to be ok during the day (at work) because I don’t really eat through fear of triggering off the brass band! I’ve noticed as soon as I come home the urgency kicks in. I don’t want to go back onto steriods as I suffered terrible memory loss and insomnia. I’m confused about what foods could potentially calm it down, so any suggestions from yourself or anybody else would be very much appreciated.

    Hayley

  4. Sam K
    Sam K December 5, 2013 at 4:55 pm #

    Hi Rainy,
    Thanks for your comments. My biggest advice is if you can catch a flare in it’s first signs of symptoms, you are GOLDEN. I called my Dr within a day of seeing blood and was able to control my symptoms within a week. The last time I waiting and tried to cure it with diet, etc I ended up in the hospital. (They tried me on an experiemental drug that DID NOT WORK and took my insurance 3 weeks to approve)I am not a fan of enemas. They always came back out and I found them demoralizing. Just me, though.
    I used to do the same with fasting so I wasn’t running to the bathroom at work but it is not a good idea. It makes the colon lazy, from what I have read and gives us an unrealistic feeling that we are healthy. Of course we feel good, there is no food churning and making us want to sweat and run to the bathroom. Even if you can eat a banana or a piece of toast, try to get it down. The soup is also really good if you make it from scratch. Let me know if you need help doing that. It only requires a crock pot and a few items :)
    Oh and I know the steroids SUCK but they have saved my life, LITERALLY. I hate them, too but I welcome the energy. I try to take the good out of it.

  5. Brii Callahan December 6, 2013 at 2:14 pm #

    Hello,
    I am 21 years old and was recently diagnosed with ulcerative colitis while in the hospital for pancreatitus. Right now I am taking 4 grams of Lialda each morning and an Mesalamine enema each night. They are starting me on a steroid next week because I am still flaring up with my current meds (its been 3 weeks since I got out of the hospital with resolved pancreatitus). After 6 weeks of being on the steroid they said they are going to switch me to an anti immune medication as long as my body has a certain enzyme that with tolerate the med versus making it toxic. I have only lost about 5-10 pounds, but i am only 125 and 5’8 so I dont have much to lose. I cant tell which foods cause my pain except for the obvious greasy pizza and cheeseburgers. I try to drink at least 2 liters of water each day and I have been avoiding alcohol but in your opinion does alcohol have that much of an effect? I am in my prime drinking age and would like to have fun while I am young…not to mention I dont want to completely change my lifestyle because of this disease. I really hope the steroid wqorkd for me because I am in pain on and off every day (usually after I eat), and almost every bowel movement consists of bloody mucous and sharp abdominal pain. I hate having to go to the bathroom 10 times a day and having to get out of bed all night. I was so healthy and fit I dont dont undserstand…..Also, as far as working out and running what would you recommend? I have not been exercising since June because of other health issues, to include celiac artery compression and superior mesenteric artery compression syndrome, which are being put off until the UC is maintained. I am a little nervous to start back up a work out regimen again. Any advice would be appreciated!

  6. Sam K
    Sam K December 7, 2013 at 6:23 am #

    Hi Brii- so sorry you got this disease so young. I have read NUMEROUS articles on prednisone and drinking over the years and the results are inconclusive. HOWEVER, if you are in a serious flare, I do not recommend it. Are you still pretty sick right now? Going to the bathroom more than 5 times a day? The alcohol is really like putting salt in the wound and you are just prolonging your progress. I know it is REALLY hard to not drink at that age with your friends and I did it anyways but I found myself having accidents in public places and it just isn’t worth it. If you have to order one just for the purposes of going with the flow, order a vodka water with lime and SIP it and let the ice melt so it isn’t so hard on your system. Also, never do it on an empty stomach.
    I typically do not start drinking again until my bowel movements are formed again and there is no pain or urgency. Hell, the steroids alone are altering substance enough. My friends love to call me the roid-rager when I am on them and get a kick out of my bold comments. LOL
    As far as running, I know it is hard to do when you are in the midst of a flare and I have had flares where I continued to run and it helped me. But let’s be honest, you are already losing weight as is, in a flare, and running and not eating and having low energy due to malabsorption of nutrients isn’t good. If you are going to exercise in a flare, I recommend walking on a grade or lifting light weights and seeing how you feel from there. I am training for a half marathon right now and put in a lot of miles but was intimidated to do so in a full flare because running 8-9 miles outside was a NIGHTMARE!!!! I am sure you can imagine.
    I hope this helps you. Holler at me if you have any more questions.

  7. Ryan H. December 8, 2013 at 4:46 am #

    Brii,

    Your story sound familiar. I was once in daily pain. 5-6 bms a day, heavy gas, urgency to go and a feeling of mild depression as this gross, horrible, misunderstood disease slowly takes over and changes your life. But there’s hope. There is an answer. No doctor will give it to you. No Chinese herb specialist or smoke and mirrors quack will make you better. The only way you can get back to health and a normal life is by realizing you life has and forever will be changed. You are on a website talking about diarrhea and bloody bowel movements. The light should go off in your head; the house is on fire; whether you want to change is not the question because you have changed and the only way to coupe is it understand that UC is a nasty beast and it time to kick his a$$. If you don’t he will consume you. Now that you realized you have changed and that in order to heal you have to change you behavior. You need to legitimately go on an SCDiet. No joke. Drinking ,being 21, sorry buddy, no beer. Maybe after months on SCDiet you can small amounts of distilled spirits. But you have to try it for a year. It will, if you follow the rules (meaning no small cheating ie.. I love cream so I won’t give that up, or a piece of fudge now and again) you will heal. You need to tell everyone. Friends and family will back you and help and not let you cheat. If they love you then they want you to get better and the SCDiet works. Once on the diet you body will start to heal and you will feel better. You will start to be able to excerise more regularly and not have to squat for a dump in the woods. Soon you will have less symptoms and you can start to ween yourself off meds. Bottom line you are close to this realization and I just want to help you get there faster. The choice is up to you on whether you ultimately want to feel better or continue down the same unpleasant path you are currently on. For what it’s worth, I no longer take any for of medication, supplements or anything. I only watch my food and drink intake based off if the SCDiet and I am health and happy. I have a great support team in family and friends. I wish you will join us on the side of recovery. Good luck.

    And remember “sugar is sh!t”

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