Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

New to this World!

diagnosed july 2014 with ulcerative colitis

My name is Sam and I was recently diagnosed with ulcerative colitis in July 2014. Lucky me! I am 25, a recent graduate, and science educator for a small science museum. My diagnosis has changed my life in some unsuspecting ways (I never expected my life to revolve around bowl movements, but here we are!).

Some more about Sam:

I am an outdoor enthusiast and Oregon native. That being said, I do enjoy a good netflix marathon (good thing too, I’ve had more than my fair share since my diagnosis).

A little background info: I was raised by two inspiring people who’s hearts are always in the right place. They instilled in me my biggest values: love, loyalty, a respect and awe for the natural world, and to question everything. Since my diagnosis every one of these values has been tested in inexplicable ways, and it has only been a few (albeit very long) months! I graduated about a year ago, took the winter to play while working at a ski resort, and recently moved to a small town in northern Idaho, chasing love.

Current Colitis Symptoms:

I ignored my symptoms for a shameful amount of time, not wanting to face a diagnosis. In the long run though, denial probably made things worse, and I have a lot of healing to do! I currently go once or twice a day, and usually do not see blood (a very recent phenomenon). I do have some bloating/cramping/pain in my left colon pretty regularly. To top it off every month while I’m menstruating, my symptoms worsen, and I have to really watch what I eat.

I cannot do cow lactose, period. Occasionally I will eat some very, very aged cheese (super low in lactose). I have made a complete transition to goat-only dairy, and no fresh goat cheese. I also cut out gluten for the most part, and the only starchy food I eat is rice. Changing my diet has drastically changed my life! I was food obsessed before my diagnosis, always experimenting with new things. Now, its a few basic staples like goat yogurt, fish, chicken, squash, and almond/coconut everything. I have a relentless sweet tooth, and am always on the prowl for a treat I can easily digest. Coffee has been the most difficult to let go of, and is the first thing I go to when I feel well.

Although I am taking daily medication for my UC, if I deter from my simple diet too often, I begin slipping back into diarrhea/cramping/bloating/bleeding.

My biggest concern is that although my symptoms are mild, I still have pain and discomfort in my lower left colon, and my doctor is saying my blood work still indicates elevated inflammatory proteins.

New to this World!

I had just gotten back from a month-long hiatus from life traveling in France when I decided to face my symptoms. Traveling, although amazing and exciting, is packed full of stressful experiences from jet lag to sleeping on trains. In addition to travel stress, my partner-in-crime had just moved to another state pursuing his career. Before I left for France, I wrapped up an amazing season working at a ski resort, where I regularly pushed my body to the limit, meanwhile living off bad food (I left for work around 5:00am and often didn’t get home until 7:00 or 8:00 in the evening, I quite literally LIVED on that mountain, and ate what it had to offer a poor snow bum: discounted fast food). I personally believe this combination, a trifecta of physical and mental stress, triggered my inevitable flare up. As brutally honest as this sounds, I was all blood, pain, and tears for a few weeks before and after my diagnosis. My GI doctor was as weste rn medicine as it gets, but was supportive enough (side note: my primary doctor was a halfwit. I had actually reported bleeding YEARS ago, which she chalked up to a cut and sent me on my way with the instruction to eat more fiber, knowing full well my family history. I was eager to believe I didn’t have UC, so I didn’t question her diagnosis). Getting into my primary doctor for a referral, then getting into the GI office, then scheduling a colonoscopy took a month. In that month I lost a lot of blood, a lot of weight, and a good deal of my pride. At first, my GI doctor said it looked like I had isolated inflammation in my lower left colon and rectum, and I would likely only have to go on medication for a few months (hurray!). However, after examining the tissue samples from throughout my colon, she informed me I had a good deal of inflammation in my entire colon, and would have to be on medication for the rest of my life. This moment was by far the hardest, and I d on’t think I will ever forget it. This was the moment I finally realized my life was changing forever.

UC runs in my family, both my dad and his brother are diagnosed, and his 3 other siblings all have some form of IBD/IBS. Many of my cousins (all on my dad’s side) have IBS as well. Having a support system who understood my experiences has been a saving grace, but also a terrifying reality of what I have in store for me. I’ve watched my dad go in and out of hospital visits and doctor’s appointments, and on and off some terrible drugs. I watched different doctors tell him his only option was removing his colon, that NOTHING else would work. I’ve seen him tell those doctors how wrong they were and get better on his own, without medication. What’s worse? Watching my dad experience Lymphoma, a known side effect of imuran, the only drug that ever successfully kept him in remission. Now, he is a cancer survivor and has been in remission from his Colitis for almost two years without medication.

There is hope for me in his story, but also terror. I constantly ask myself if I have the strength to tell any doctor their prescribed treatment is wrong. My dad is a peaceful person, whose grace and wisdom has followed him through each trial.

But I struggle every single day trying to understand how my old self fits into the box UC has created for me. Forever is the hardest word for me to digest. Six months ago, forever was a fleeting concept, not even remotely close to belonging in this 25 year old adventurer’s vocabulary. Now, forever haunts me. It follows we around, constantly reminding me with each rumble in my gut: you will always have this. Spontaneous trips are no longer an option, because I have to plan everything down to the T unless I want to pay for it later. Now, normal is the word that doesn’t fit anywhere in my vocabulary.

My biggest questions for my fellow UC’ers are:

When does the acceptance kick in? It’s been about 3 months since my official diagnosis, and every day is still dictated by colitis thoughts. I’m struggling to find the confident, adventurous, driven person I was before my diagnosis.

Success with diets? I have read a lot about AIP, SCD, GAPS, etc. I understand each person is different, but should I dare to hope I could survive without medication by finding a diet that works for me? I hate the idea that I will be dependent on medication for the rest of my days, especially since my prescriptions cost me hundreds (that’s with insurance).

Overall, any advice is welcome.

 

Medications / Supplements:

Medication:
Lialda (Mesalamine) – 4 horse pills daily (check out the Lialda reviews page on this page)

Supplements:
Slippery Elm (Brand: Oregon’s Wild Harvest)  I actually notice a difference with this supplement, even between brands)
L-glutamine
Probiotics
Claritin-d(started taking it for allergies and noticed a HUGE difference in my UC when I didn’t take it) I did some research on this, and found similar claims, the general consensus is if it helps, only take it to help reduce flare up symptoms.

 

written by Sam

 

submitted in the colitis venting area

(add your story here)




12 Responses to New to this World!

  1. April Lavoie-Legrand October 16, 2014 at 9:09 am #

    Well first i’d like to say…. im glad you are now accepting that you have this disease. It does not have to run your life though. I have been on many many medications in my lifetime. I was diagnosed at the age of 11 and i am now 35 and working and continuing my life. But one key thing that you have said is… Find what works for you. I have known many many people with this disease and honestly no 2 cases are the same. I am fine with dairy. Im fine with cheese. What i cant eat is the coniferous veggies. I have to cook all my veggies until they are mushy. Also i cant eat corn of any kind. I cant eat wheat, but im okay with pasta , rice and white bread. Its a weird process of elimination. I for one am all for experimental drugs or treatments and i opted for anything that my doctor could do. I have Dr Feaghan in London Ontario, he is the Head of the Colitis and Crohns research for Ontario and his motive is to prevent Surgery…. I was lucky to have changed doctors to him, my previous doctor wanted to do surgery, surgery surgery….. and give me Imuran, or Remicade. Even though i had told him that it makes me sick….. I refused it and went elsewhere and now im on Vedolizumab and my immune system thanks me for it. I havent gotten sick in over a year now and am heading in the right direction of remission. But i do feel 90 percent better so far. But its a 3 year process. I find that becasue im in severe condition with no meds i really have entered the point of no return to not be on meds. But since you are still early enough maybe you can try probiotics and eating habits to control yours from getting worse…. I used to live in fear of the ever sooooo famous… “What am i going to do if there is no toilet near by?” and constantly planning where i can stop for a washroom break any where we went. Its exhausting…. So for your sake i am glad you have a diagnosis and i hope you can control yours with food and diet. If it gets worse, ask about your options and try to avoid surgery. Once you start surgeries, it seems they never stop. Good luck, and i hope you feel better soon. Take care.

  2. Matt October 16, 2014 at 1:22 pm #

    Hi Sam,

    I was diagnosed in my 20’s about 10yrs ago now. Don’t worry too much about setting yourself goals such as acceptance, just try and keep your life as close to normal as it ever was. I have a cool career and am very sporty. Sometimes, i have a bad few weeks (Netflicks!) but its just a speed bump, i refuse to let UC define me! Anyway, everyones UC seems a bit different and what works for one, will sometimes be bad for others so read lots and work out what works for you. That way, you can keep things as normal as possible.

    So, what works for me:

    The Good.
    Infliximab (remicade)- the only drug that works for me without side effects.
    Soluble fiber
    water
    exercise
    moderate spirits
    pro biotics (VSL3)
    Olive oil
    Sleep
    Getting into a ‘morning routine’

    The Bad
    The various diets (didn’t make any difference)
    Red meat
    Coffee (even decaf)
    Ice cream or heavy dairy
    too much sugar
    insoluble fiber (under cooked veggies etc)
    Stress
    Altitude (weirdly). Climbing and skiing trips!!??

    Good luck and it really isn’t the end of the world, just manage it and don’t let it stop you having fun!

    • Sam M
      Sam October 16, 2014 at 4:50 pm #

      Matt,

      Thanks for the advice! When you have a bad few weeks do you add more medication, or just rest? I am still trying to find what is “normal” for me, and when I have reason to be concerned. Every time I feel a little off in my gut I start to panic, fearing I’m falling back into this flare I’ve worked so hard to control. My flare started in the end of June and I am just now beginning to add semi-normal food into my diet and able to eat enough to actually feel full (before I hardly ate, but made sure what I did eat had some vitamins, and experimented with a lot of supplements so I wouldn’t be nutrient deficient).

      It’s really nice to hear you still get to get out and do sports. I’m so worried I have to kick some of my hobbies to the curb. But I’m really concerned that altitude might be a problem, as I’m an avid snowboarder and love rock climbing. How much does altitude bother you?

      Thanks again for sharing :)

      • russell andersen October 17, 2014 at 6:15 am #

        welcome to HELL !! hang in there . first year or two is the hardest .

  3. Anna Hanlon October 17, 2014 at 2:10 am #

    hi Sam,
    You sound like a great chick and I found my self sitting here reading this getting all teary as I have been through all this… So you love the Snow huh?!! I live in Falls Creek, Victoria, Australia and it is amaaaaazing!!!!! We had a great season!!! I just wanted you to know that you sound amazing and that this will only drive you more for somebody who already sounds like a very motivated individual! I ended up having a total large bowel and rectum collectomy ( which I NEVER IMAGINED WOULD EVER HAPPEN TO ME ) I was a sassy ( sorry “am” a sassy, now 32 year old ;)
    But I was 29 when I had my first real flair up and the moron doctors couldn’t figure out what was wrong with me and if it wasn’t for my amazing partner who never takes no for an answer, he found out about chrones and colitis and gave me a brief and then we found an AMAZING specialist who looked after me in melbourne but after 8 months of fighting it and loosing over half my body weight I had no other option but to have everything removed and I went through all the surgery and had an illieostomy bag before having a “W” pouch made out of my small intestine and yes it has taken 3 years but my quality of life is incredible!!!! Living in Falls Creek had been the best thing for me to get out hiking and being surrounded by exquisite nature and wilderness so I feel amazing and I seem to be the only one in falls creek who never gets sick!!! I read stories like yours and I sometimes I feel like maybe what happened to me was the best thing in that situation as it all happened so fast and yes they put me heavily on all the horrible medications but now I’m on NOTHING!! I have a deeeevine 7 year old daughter named Pearl who goes to school in Falls Creek and there are only 6 people at her school so the support for her had been incredible!!! I read all sorts of stories from people living with it and managing it with diet, exercise ( and strangly enough… Nicotine !!! I’m serious read about the connections!!! It’s all connected to inflammatory response disorders ) and then I read things that people Ellect to have their bowels removed and look in the end of where I was at ( 8 months away from my darling daughter and my beautiful home ) I was OVER it!!! I just wanted to bloody eat!!!!! It’s my FAVOURITE thing to do!!!!! ;)
    So now I eat everything and anything I want!!!! It’s brilliant!!! I know your scaired but all you can do is keep doing the things that make you smile and happy and yes you will have to consider things a whole lot more now which use to bug me because I was such a fly by the seat of my pants no hassle kind of girl!!! But it HAS to become YOUR normal or it will do your head in!!! Find out your middle ground and except it!! Don’t compare your self EVER with somone who DOESNT have colitis because that simply isn’t you! You are STILL amazing and sexy and unbelievably strong for putting it out there and you are NEVER alone!!! Let me know if you ever want to do a ski season in Australia!!!! Stay strong girl!!! Xxx Anna

    • Sam M
      Sam October 21, 2014 at 6:13 pm #

      Thank you for your encouragement. It truly helps my sanity to hear personal stories and to be fully understood. My favorite thing to do is eat too! I’m so glad you are past all the crazy stages and have come out on the other side with such a positive attitude (staying positive is a struggle with so many unknowns!). I looked into cigarettes and am shocked! I have been so adamant my entire life about smoking, even through college when most people I knew smoked daily! I almost wish I could unknow that information, because I’m half tempted to try it!! I’d like to think in the long run if I treat my body well it’ll pay off in the future… although so far that mentality hasn’t worked out so well! But who knows how much worse my symptoms would be if I hadn’t taken pretty good care of myself (I was raised on organic whole foods, bless my mother’s heart, and have always been a physically active person).

      The temperature over here is finally dropping!! I am hoping for a great season and that my UC won’t interfere too much on the slopes. If you are ever in the Northwest US and need a snow buddy, let me know!! Thanks again for sharing:)

  4. Rebeka
    Rebeka October 17, 2014 at 5:16 pm #

    Welcome, Sam!
    It’s hard to say, when you will start to feel normal again, or when “acceptance” happens. I don’t even remember when that was the case for me. It was probably more of a transition, and it would be hard to pin point a certain moment. Because you sound so motivated, hopeful, and active, I want to just say that you can be all that, even with UC, once you find your normal.
    In my case, I was in a terrible flare that finally got me a diagnosis, and it took about six months to get over the flare. Afterward, I was in remission for over two-and-a-half years, during which I grew healthier and stronger than I was ever before! I did go about eight months without medication and without noticeable symptoms, but a routine colonoscopy revealed polyps and inflammation and that scared me back into taking meds. Now, I am pregnant and had doctors mess with my meds, which put me in another flare, but I think without the pregnancy I probably would have stayed in remission.
    Anyway, I still feel that I am healthier and stronger, or I know that I can be. I was not really athletic before the diagnosis, just enjoyed bike rides and hiking. Since the diagnosis, I started doing yoga, then really got into Brazilian Jiu Jitsu, which is very physical and demanding, and I even competed. I felt so good, I started to consider myself an athlete. I think UC can give us that kind of drive, to make the best out of good days and live more passionately or intensely.

  5. Tita October 19, 2014 at 3:45 am #

    I don’t think you ever get to fully accept this disease, especially if it affects your daily life – be it going to the toilet often, or being in pain or not being able to eat whatever you want. You just learn to live with it. Some days are better, some worse.

    Like you, I also feel pain on the left side, often before going to the toilet and some time after it. Stress and food that my body sees as the enemy are the most common reasons for the pain. I am on Pentasa and I think I will be on it for the rest of my life unless I win the jackpot. :) But I have a coworker who has had two flares but is not on any medication at the moment and she can eat a lot more than me so there is hope. ;)

    Good luck to you and may you have a lot of good days!

  6. Johnny October 19, 2014 at 5:45 am #

    Acceptance is probably the hardest thing in my opinion. In 23, was diagnosed in August of 2012 after months of knowing something was wrong but trying to work it out on my own with diet and whatnot. I was unwise and working 70+ hours a week up until about 2 weeks before I was hospitalized while waiting for my specialist appointment that was still 2 months off. There were medical mishaps, one of which was me never getting my initial blood work results from my primary doctor, still don’t know who dropped the ball, just thinking about it makes me mad.

    Anyway acceptance, for me since this all started every winter I seem to get really bad, it started in the winter as well, while I was working at a meat packing plant. At least for me cold has extreme negative affects on my condition. This summer was the first time I was able to get back to work since this started, I worked in some food stands at events and roadside, which was great because It was about 100 degrees inside. I ended up having a side affect from medication affecting my mental stability, now I’m off of that. But did not figure it out until after I fell off the deep end said really crazy sounding things to friends and family, that’s awkward.

    I thought I was more or less “better” because I was feeling great all summer, I was planning on heading south for the winter like some kind of bird and working on my music, I write. Now I legally have to stay in the state and I’m unemployed again due to being literally incapable of working. I spent the better part of the last month sleeping 14+ hours a day. Good note, I should be starting Humara here pretty soon, if it works I will be so happy.

    Netflix=my life right now

  7. Jenna B
    Jenna B October 21, 2014 at 2:51 pm #

    Hi Sam!
    I can really relate to your story, I too was active (snowboard, volleyball, hiking, snowshoeing, etc) and was the most spontaneous person you met, always traveling (for work but also more for play) so I hadn’t had a solid routine in about 5 years, eating and drinking poorly as well but assumed I was healthy because I worked out a lot and was very active. I am 28, diagnosed almost a year ago, and I can’t tell you how many tears I’ve cried and have tried and tried to accept it and figure things out, but no one really understands how hard it is and how much our lives are not the same now. I am happy you have family members to chat about this with, I feel like I have no one (except this website and people like you) that can relate, and my poor boyfriend who is amazing and has been my rock through this. They don’t understand why I have to say “I Can’t do that or I can’t go there” so often now because they know I am not “me” anymore. Acceptance is hard, I have not reached that point yet and hope I can soon. It is an AMAZING feeling when I actually feel good (which is not often at all, maybe one day per month), and for that one moment I am truly happy, not worrying about being sick, I immediately get depressed because I remember how I used to feel this good all the time, and I feel now that I almost took it for granted.
    I too find myself in front of Netflix (I just started watching Gilmore Girls from the beginning) Guilty pleasure I guess, haha, but I hate that I now spend my free time on the couch instead of playing outside and traveling and seeing my friends but relaxing is key for me right now until I can cope with this disease and learn to live with it or find something that really helps me.
    Hang in there! Somethings gotta give… :)
    JB

    • Sam M
      Sam October 21, 2014 at 6:29 pm #

      I’m banking on that “somethings gotta give” idea!! The idea that you aren’t the same anymore is so hard for people who know you to grasp. On the outside, I don’t seem different to the people I have known for years, but that day to day battle is still lingering just below the surface. Not being able to go out and do my normal social thing is difficult. Being from the pacific northwest, everyone out here LOVES wine and beer, and being in my twenties pretty much solidifies that every social gathering revolves around or involves alcohol. Its a pretty awkward conversation trying to explain why you aren’t drinking. I have also become THAT friend that is difficult to plan around! I’d like to think I was a pretty easygoing individual before I started obsessing about what I could or couldn’t eat. When I’m with friends planning dinner, people look to me because they know we can’t just go anywhere. Then when we order I sound like a crazed health freak (gluten free, dairy free everything), and I apologize every time I order as the waiter pretends I’m not a pain in their butt.
      I hope you the very best on the road to an easier lifestyle. I completely relate to that frustrating feeling sitting at home on the coach because you know your body needs it, while your brain is grasping for some excitement! I still hike pretty regularly, but I always make sure not to push it. I took a big step back in my recovery when I went on a 17 mile bike ride last month (combined with eating some dairy), so I know I’m not quiet ready for that much activity.
      Thank you so much for sharing your experiences with me!

  8. Jenna B
    Jenna B October 22, 2014 at 8:48 am #

    Sam,
    Quick question, you say you tend to flare during your “time of the month” is that the exact week? Are you on birth control? I notice that I tend to have symptoms the week before I start, then when I do start, it gets a lot better (weird!). I went off birth control about 5 months ago after doing some research and I want to say it is helping a little, but with all the meds I have been on and off and adding my own supplements, can’t really pinpoint anything yet. Before I was diagnosed the only thing that made me feel good was alcohol, and now they say stay away from it! I can related to being “that friend” haha :)

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