UC Roller Coaster Ride

recent picture of Sandra!

recent picture of Sandra!

Introduction:

Hello everyone, My name is Sandra and I will be 22 in a couple of months. Since I was a baby I was lactose-Intolerant. In 2010, I was diagnosed with UC right after my high school graduation. I’ve had several colonoscopies and hospital stays since then. Safe to say, these past three years have been quite the roller coaster ride.

Some more about Sandra:

I am from Ontario, Canada. I am currently in school for Special Events Planning. I wish to be a Certified Meetings Planner. I love organizing events and finalizing details. I’m sort of a perfectionist. I am detail oriented and tend to worry way too much.

In 2012 I received my diploma for Baking and Pastry Arts Management. I am now finishing my Special Events Planning diploma program, and am working towards becoming a Certified Meeting Planner.

I love spending the time with my family, relaxing at home and playing board games. I also love baking, shopping, and cuddling with my dog.

Symptoms:

I’ve been having flare ups since April 2012. Currently, I am experiencing mucus and some blood.

UC Roller Coaster Ride

Before I was diagnosed, I was like any normal teenager. I thought I was invincible. I hung out with friends often, partied, and ate a bunch of junk.

It was nearing the end of my grade 12 year that I noticed some symptoms. Mucus was the first. I had it for a few months and didn’t tell anyone. I was nervous, but did not like to admit when something was wrong.

It got worse during the summer after my high school graduation. I was bedridden. I was bleeding, barely ate, went to the bathroom 20+ a day, could not sleep. I had a colonoscopy done and was just waiting for the diagnoses so I could get my medication. That summer was hard, my friends didn’t understand what I was going through. All they wanted to do was hang out. My family, felt helpless. I hated seeing the look in their eyes of wanted to help but not being able to, I still hate it to this day.

I was put on Salofalk, and started to see an improvement. I eventually had to reach the max. dosage to keep in remission. I was able to start my baking and pastry arts program in remission, and finished it two years later with not one flare.

It was near the end of this program that I met the love of my life. We use to go to high school together, but did not speak until after high school. I don’t think I’d be as strong as I am now with out him.

It was soon after that my doctor decided it would be a good idea to decrease my dosage of salofalk. I started flaring up. He increased it back, but I was still flaring. So I was put on prednisone. I read all the bad reviews of the drug, but thought those people were crazy. The prednisone worked wonders for me. I did not get any bad symptoms like moon face, weight gain, joint pain.

Of course, that was only during the beginning of my prednisone journey. I’ve now been on prednisone for over a year now. And I finally got the full affect of its symptoms. My face swelled up and had acne everywhere. It even became infected, with white puss all over. I gained 15 pounds in two weeks which resulted in delightful stretch marks, yay. My knees started to hurt from bending down.

During this time I was researching diets to help with UC. I came across the SCD and tried it strictly for 6 months. My family was a huge help with this. They even adjusted their diet to support me. I felt healthier, but I was getting worse. I was losing too much weight and decided to start eating carbs again.

Every time I tapper down on prednisone, I flare up. The plan was to put me on Immuran, but remission just wasn’t in my agenda. I was hospitalized in May and then again in June. I was then introduced to Remicade, also known as the miracle drug. My doctor said that it would put me in remission, and that when I’m almost tappered off the prednisone I would start the Immuran. I got my first dosage of Remicade in June while I was at the hospital. After a couple of weeks I felt better than ever. I don’t remember the last time I took a solid poop! I felt good. Of course, during exam time it got worse again. I was hospitalized again in December. My Remicade dosage was doubled, and my treatment periods were shortened.

It has been 3 weeks since my last Remicade infusion, and I am already starting to see symptoms, mucus and some blood. I am considering surgery, because I just want this to be over. I am suppose to go on a scholarship trip in a couple of weeks, I don’t even know if I’ll be able to make it. UC has definitely changed my life. I hate having to revolve my schedule around it. I’ve had to cancel many plans, and put several things on hold because I could not stress myself and aggravate my colon even more.

My doctor wants to try everything before surgery. How much longer do I have to put my life on hold to find something that works? Everyone is finishing school now and starting their careers. Some are even starting their families. I am the type of person who worries way too much, wants everything to be organized and detail oriented. The career field I would love to go into is stress oriented. Am I suppose to not do what I love because of my disease? Or should I get the surgery so I can finally start my life.

Either way, I’m scared. I don’t tell my family because I hate that look I get. My boyfriend says he will back me up with any route I go.

What decision is the right decision?

Medications / Supplements:

Salofalk: Was great until my dosage was decreased
Prednisone: Perfect for a fast fix, but get off of it ASAP!
Remicade: Miracle drug, as long as it keeps working for you.
Immuran: No idea, haven’t been able to start it as yet.

Surgery: Any advice?

written by Sandra D

submitted in the colitis venting area









18 Responses to UC Roller Coaster Ride

  1. Brittany January 9, 2014 at 6:52 am #

    Hello! Just wanted to let you know I went through almost the same thing you are going through. I wanted my UC gone so bad I was wanting surgery but the process freaked me out and I didn’t want to have a bag… I am 22 and graduated college on December 14 th with a flare up that lasted over two months. Well December 17 th I was hospitalized with a perforated bowl the surgeons said I had 20 mins to get to surgery or I would die. Needless to say I had the surgery and woke up without a colon or large intestine. I had a million issues after surgery and will need two more surgeries in the future to get me back to normal. I am embarrassed of my bag and the insision he gave me is a bikini cut but all is horribly painful. BUT no more UC! No more 800$ meds no more missing school and work and life events. I didn’t get to make the choice to have the surgery but no being sick and living in my bathroom for the first time in forever is pretty nice. Have to look at the positive side. Just realize the technology we have today is amazing and you hopefully won’t have a bag forever and you can hopefully live your life to the fullest with no more UC. Idk if I could have mustered up the courage to have the surgery on my own but someone else made the choice for me and I’m glad he did. Idk if my story helps you at all but just do your research and find someone at a hospital you trust. Best of luck to you!

    • Sandra D
      Sandra January 14, 2014 at 10:37 pm #

      Thanks Brittany,

      Your story has helped. How are you doing now with the recovery now?

      Right now I seem to be reacting to the double dosage of remicade, but that could just be because I am no longer stressed. I don’t start school until March….. So we’ll see how that goes.

  2. Calie Woike January 9, 2014 at 7:36 am #

    I’m turning 24 next month and have been battling UC since I was 14. I have as well been in and out of the hospital because of flares. When I was younger I pretty much had it under control with just oral meds. I started remicade when I was in high school (around my junior year) and remicade worked so well for me and continued it for about 4-5 years. My husband and I decided we wanted a baby, so I became pregnant and stopped the remicade. (While I was pregnant I was the healthiest I had ever been! It’s like the UC was gone) After the baby my dad passed away and learned that my husband would be deploying to Afghanistan, creating tons of stress and i started to flare up. I restarted the remicade and after 6 months of trying had no releif. I then started on Humira, with injections every 2 weeks, I did that for about 8 months with no relief as well. I was getting so frustrated because my doctor wanted me to just continue taking it and said it would eventually start working. I finally stopped it on my own. December 2012 I was hospitalized and same with this past December (2013). This December I was so sick I couldn’t even leave my house and could barely take care of my now 2 year old. I went in for a colonoscopy and learned that my severe inflammation has led to polyps all over my colon which will eventually progress to cancer. When I heard the word cancer I was hysterical! I’m 23 years old with a little boy who depends on me.. My GI then proceeded to tell me I have to have my colon removed. This past week I met with a colorectal surgeon and will have j-pouch surgery in about a month. I’m so excited it’s not even funny and wish I would have learned about surgery options earlier! After 10 years I finally have a positive outlook, I will be able to live without pain and without being in constant fear of not making it to the bathroom. It will make me a better mom, wife and overall just improve my quality of life.

    • Sandra D
      Sandra January 14, 2014 at 10:43 pm #

      Hi Calie,

      I’m so sorry to hear that you are having such a difficult and stressful time right now. I’m glad we have the technology and knowledge that we do today. I hope the surgery goes well and does wonders for you!

      Right now I am doing okay on the double dosage of Remicade… Not sure what will happen. If I flare up again after tapering down I will seriously consider surgery. I just feel like at the time in my life I can’t wait for the recovery time.

      I hope Remicade will be better this time.

      Let me know how it goes with the surgery :) I’m positive you are a wonderful mother and wife!

  3. HEATHEN HOLIDAY January 9, 2014 at 8:09 am #

    Hi Sandra…

    You’re not alone on the prednisone. I have been stuck on 15mg for over 3 years now and I am too scared to get off it. Every single time I try to taper down to 10mg I start flaring again. I have had some flare ups during the 15mg, but I do a quick 40mg taper down to 15 again and it gets rid of the blood. The Drs HATE that I am stuck on prednisone, 15mg, but that’s the only thing that makes my life tolerable besides 6 -800 Asacol HD a day and percocet when needed for cramping or pain. It’s just a band-aid… with potential long term bad side-effects… but meanwhile….

    How is your diet? Did you start eating whatever you wanted when the Remicade was working for you? Diet is KEY to conquering this disease. No matter what the Drs tell you that it hasn’t nothing to do with it, they are LYING through their teeth. It has everything to do with it, as well a host of other health problems and diseases as well.

    Remicade was HELL ON EARTH for me. Did nothing but keep me bed-ridden for over 6 weeks with bloody noses, extreme joint pain, headaches, puking, like my soul was ripped out of my body. I only had 2 infusions and I cried every day for the time it was still in my system. 6MP made me sicker. Imuran made me sicker. Just be careful when they use you as a guinea pig to try something new you haven’t tried before, these meds can make you worse. READ EVERYTHING YOU CAN ABOUT DIET, including organic vs. inorganic, GMOs…. try an experiment of staying away from dairy and grains and eat only single ingredient foods, nothing processed, pre-made or canned with a long list of ingredients. Eat only lean meats, steamed vegetables and fruit and see how that works for you in a week. Watch the ingredient list like a HAWK. They slip in sugar and preservatives and highly toxic poisons in things… because they’re jerks who just want to sell food to us that tastes good.

    • Sandra D
      Sandra January 14, 2014 at 10:51 pm #

      Hi Heathen,

      When I started the remicade at first I did indulge myself. But after eating healthy for so long you realize that the junk is just that. Junk. So I went back to watching my diet as best as I can. When my mom or I, still living at home, do grocery shopping we read the ingredient lists on every product we buy. We only buy whole foods, avoiding all the processed junk they have with preservatives.

      I don’t eat any dairy products. Or anything that contains dairy. I rarely eat out, when I do it is for special occasions. I’m not saying it is perfect, but I think I eat a lot healthier.

      It’s hard to live in a house hold with members of the family who don’t need to adjust their diets. I am the only one in my entire family with UC. There is no family history of it. My parents try their best to be supportive, but sometimes it is hard for them to cook for me.

      I found that even just on the prednisone I was acting up. The doctor said that I have the most severe case of UC called Panscolitis? It’s a pain in the ass, literally.

      How are you just on prednisone?

  4. Donna G
    Donna G January 9, 2014 at 11:10 am #

    Hello Sandra,

    You have skills that will be useful to you. This illness requires great attention to details so you already have that in your corner. Have you tried adding probiotic foods to your diet. I’ve been absolutely loving Bubbies pickles and they are full of probiotic. I agree with the above comment, that diet is key. Have you done any research on Fecal Transplant? Before I lost my colon I would investigate all that I could. You have a loving, supportive family and that is wonderful. Give them materials to read so that they can know what you are going through and help you with your research. Take care of yourself.

    Donna

    • Sandra D
      Sandra January 14, 2014 at 10:57 pm #

      Hello Donna,

      My mom actually mentioned Fecal Transplant to me and we looked it up. It looked promising and mentioned it to the doctor. He said that they have been doing it for years and it has been successful, however not with my type of colitis.

      He said that there is UC where you have more bad bacteria than good bacteria, which in this case Fecal Transplant would work.

      Then there is the UC in which your immune system is over working and thinks your colon does not belong so it continuously attacks it, causing the flare ups. That’s why I was put on the remicade to suppress my immune system to prevent that from happening.

      So I was told, in my situation, it would not be beneficial.

      I do try to eat whole foods and stay away from the junk. I try to get probiotics but it is hard when you are lactose intolerant. I use to take supplements, but stopped when I got sick. Should start that up again.

      Are you on any medication to treat your UC?

      • bev January 15, 2014 at 10:00 am #

        Sandra, your post is so very interesting.

        It makes me wonder if one can have either, or even both ‘types’ of UCs, or if there is also a drug induced UC, like from taking Accutane…so more types of UC…how many I wonder…

        The reason I say this is that, this is the first time I’ve heard this explained like how your doctor explained it. It makes sense. I believe that I have the ‘bad bacteria’ type, as probiotics seem to do the trick for me…however, I also think that I have the immune induced type, as after I received the flu shot, an immune response was triggered, and a flare started…I doubled up on astaxanthin (a natural anti inflammatory) and I am alright again.

        I also took Accutane four different times in my young adult life, for acne…I took a lot of antibiotics as a very young child, for bad tonsils…I am hypothyroid, which is a so called auto immune disease, which can also mean auto immune UC…all of these things…mmmm. It sure is complicated, yet, the way your doctor described it, perhaps a person can have more than one ‘type’ of UC, or the UC can be triggered by more than one type of factor…

        We should all discuss this!!

  5. Sher January 9, 2014 at 11:46 am #

    Sandra,
    I’m sorry your not feeling so hot. I have to say my worst days were in the first few years of my diagnosis… I was 22 and felt invisible, over the years I have learned to take good care of my body. I hadn’t had a flare for over a year until recently. They definately haven’t been as bad as they were in the beginning. I agree with what everyone is saying about food… stick to th basics! For me in this flare banana for breakfast, and also as a snack, plain white rice, maybe some baked chicken and veggies for dinner. I avoid any added sauces, etc, limit your sugar intake. I also found a high acidic diet is bad for at least my gut. I research low acidic foods and also take a shot of AppleCider Vingar to help. Here has been my strategy to help me out if this flare, I have to be very “organized” with my schedule of supplements so I know what works.

    am i take 1 tsp of l-glutamine free form powder in water
    Mid day I take 2 sufasalazine tabs prescribe by dr (I’m not sure if they’re helping or not, I’m gonna just finish the bottle)
    With lunch I take aztaxathan and curcumin
    After lunch I take Brommelain
    Late afternoon I take 2 more sufasalazine
    After work I take a probiotic
    I take a shot of ACV before dinner
    At night I take vit C, E, zinc
    I also for 1 week do a Vit E Enema

    Wheeeew that seems like a lot! I’m only doing all to get me out of the flare, which I’m only going 2-3 x a day now semi-formed! That’s down from 10 straight liquid, mucus, and some blood, I also have a lot of energy back! I wrote down all that has seemed to help me in the past and then in a notebook wrote what time I was going to take them. I feel older than I am, I carry around one of those pill holder thingys :-) !
    If I could give you one piece if advise, stay away from bread and sugar… gluten free does not mean carb free, some people get that confused. Be careful with the prednisone, I don’t think it’s meant to be a long term solution, and take things one day at a time!

    Take care!

    • Sandra D
      Sandra January 14, 2014 at 11:05 pm #

      Hey Sher!

      That does seem like a lot! But if it’s helping you, why not! Out of curiosity, are you on any medication? Or are you just taking those supplements when you are in a flare?

      So glad you are concurring that flare!!! I find it so difficult to try to find solutions to come out of a flare on my own because when I flare it gets very severe very fast. I go 20+ cant sleep, eat, function.

      I am actually trying to lower my gluten intake. I found when I was on the SCDiet the gluten free aspect of it was a good thing. I make a conscious effort to avoid grains and substitute it for better starches.

      • Sher January 15, 2014 at 11:22 am #

        I am only currently on sufasalazine, which I’m not sure if it is working or not… about 5 years ago I was taking about 3 different UC meds several times a day and STILL had problems, when I quit taking them and did diet and vitamins I was exactly the same if not better, I changed my diet 2 years ago…hesitantly! It was the best thing I ever did. However, when you start feeling well you start acting as if you did prior to UC, my mistake. A long vacation and a little too much alcohol, well let’s be honest… A lot too much alcohol set me into a raging flare in September, which I am still paying for. I hadn’t been to a Dr for UC for over a year, but with my tail tucked I went to my internal med dr. He prescribed proctofoam, which is a steroid administered to the other end, for only 2 weeks, which I almost immediately stopped seeing traces of blood, hallelujah! I had no side effects like the pred have me. However I still had painful tummy, bloating and tiredness. I was also given lomotil, an anti-diarrhea med. I want to be completely med free again! I’m trying everything I read about, and some days are great, but I know I still have work to do… I’m just glad I’m out of the hourly bathroom trips, those are exhausting! Most painful is when I eat too much at once. The older I get the harder it is to bounce back… I wish you luck and please keep us posted on how you’re doing!

  6. Karin Hagel January 10, 2014 at 6:04 am #

    I have read the above comments and I am sad that people become victims of their guts/colon…! I have a family member that is type A, works hard and developed UC later in life (40’s). Mezzavant (anti-inflammatory) and Immuran did nothing really and the next step was Remicade – After researching Remicada I was adamant to find something else……and surgery is not the solution either….! I found A.M.P. Floracel on the internet and he began taking the dosage recommended (aloe vera – but the kind that is easier to digest – re: may have to take with immodium initially) and over about a month’s time the bleeding, urgency and bloating stopped. In remission I believe – had a flare up after Christmas – eating too much of the wrong foods – fatty, sweet and salty! Accept that our food today is contaminated and is not beneficial to our internal environment! Your gut – your second brain- has to be kept healthy – eat foods that are alkaline, small portions, and as stated above, single foods (not pre-packaged, flavour and preservative enhanced). Go to a bland diet for a while and eventually add foods and notice/write down what you eat and how you feel….! Let food be thy medicine – the centre isles of most grocery stores are stocked with “foodS” that are not more nutritious then their container – stay away…! The sooner you learn, take control and make the changes , the soon you will begin to feel human again. The A.M.P. Floracel is great – maintenance dose of 3 capsules a day – with a flare up – increase to more until flare-up calms down! Good luck and stay positive!

    • bev January 13, 2014 at 6:43 am #

      Great post Karin.

      I agree that we almost can succumb to this condition, if we allow ourselves to. The doctors happily oblige us and come right along for the ride.

      The key to ‘living’ with UC, and other bowel conditions, is like you say…take care of YOURSELF. No one else is going to do it for you.

      Cheers:)

    • Sandra D
      Sandra January 14, 2014 at 11:08 pm #

      Thanks Karin,

      That’s something I’m going to look into. Sounds interesting.

      Yeah, lol my boyfriend always says when you go shopping to go in a circle. All the whole foods are on the outsides, and to avoid the inside. It’ll make your tummy yucky.

      He’s very big on healthy dieting and exercising.

  7. Tom from Northampton
    Tom January 10, 2014 at 6:13 am #

    Sandra

    I chose to have surgery last year at 24 years old. I don’t regret my decision in the slightest. The plan was to get a jpouch, but i’ve come to realise i’m happy as i am with the bag and think i will stick with it. Having a bag is not restrictive in the slightest. Some would argue you can do more with a bag than a jpouch which is why im considering shunning the possible unpredictability of a jpouch for a more structured predictable future.

    I’m sure whatever your decision, it will be the right one however, if Remicade isn’t working and you can’t get your UC under control, do not forget that ignorance is not an option. UC does kill some people, and it’s better to be alive with a bag or a jpouch than dead surrounded by Naturo/homepathic remedies or diet books

    • Sandra D
      Sandra January 14, 2014 at 10:59 pm #

      Thank you Tom,

      So far the Remicade does seem to be helping, I find it does take a few weeks after the infusions before it starts to fully work.

      Hopefully it will continue to work. If not, I will not ignore the pain and will most likely go for surgery.

      I’m glad to hear that it’s worked out so well for you!

  8. Aval Gill January 11, 2014 at 6:47 am #

    i will suggest you to try high protein, mid carb and low fat diet, ….. low fat means least you could take …….. for proteins take one teaspoon of bee pollen in morning and evening after meal and try taking egg ehite of boiled eggs ………. i guarantee your improvement with this ………. you can contact me through my e-mail for any further questions
    email – jattavalgill123@gmail.com

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