The Last Hill Is Always The Steepest

Sean CSUN ulcerative colitis

my senor photo!

Introduction:

Hello everyone!
I was diagnosed with mild ulcerative colitis back in 2011, and it took about 7 months to get it under control (or so I thought). Then in the summer of 2012 my symptoms came back (because of a poor GI doctor), more violently than before and after a colonoscopy, I was diagnosed with severe UC. Now, a year later, I am still fighting to get my life back and I have seen much progress since.

Some more about me:

I am 21 years old from Apple Valley, CA and currently attending Cal State Northridge studying film (more specifically screenwriting). I love movies and the major reason I want to work in Hollywood is because of the film I grew up on “Jurassic Park”. I am also a sports nut. I watch sports everyday (Go Colts, Suns, LA Galaxy, Arsenal, University of Hawaii!) and I even play sports as often as I can (football, basketball, soccer, volleyball, etc.) I also like to chill with friends, collecting sports/movie memorabilia, going to the movies/concerts, playing guitar and video games, and writing in my spare time.

Symptoms:

Currently, I am having formed stools with little to no blood once (maybe twice) a day, which is comforting because that means my colon is working. It’s weird but it seems like I can feel them moving through my colon. However, there are many times when I have a painful urge to push (feels like I’m pushing out my organs through my rear end) but little to nothing except some blood comes out. I am really underweight so I get sore muscles/joint pain and get tired pretty easily. Everywhere I go I have to know where the nearest bathroom is for fear of having an accident (which does happen sometimes). I think that the majority of my inflammation and blood may be coming from the rectum, since the majority of my formed stools have minimal blood.

The Last Hill Is Always The Steepest

Having UC is a huge shock for me being that I am so young. Growing up I never worried about what I ate or how much I stressed. Now I am having extreme difficulty trying to accept this condition and trying to keep it under wraps and try to act “normal” even though I don’t feel that way. I have 4 different doctors but my new GI doctor seems to be just pushing medication which is frustrating but sometimes necessary.

My family have been very supportive in helping me with my UC. They have been telling me to keep positive and reduce stress (even though when you don’t feel good this is REALLY hard to do). Some days I feel like a 90 year old man in a nursing home and they are great at helping me out physically.

I have a bunch of questions I would like to ask fellow UCers because it seems like I have tried almost everything short of removing my colon, which I will not do.

  1. I am stuck at 120-130 pounds and exercise frequently. How do you gain weight?
  2. What are effective ways to handle stress?
  3. If there are any college students out there, how do you manage your UC while going to school/working at the same time?
  4. I tried the SCD diet but after being on it for about 6 weeks, I felt that it wasn’t working for me. I have tried introducing some foods back into my diet (and keeping a food journal) in hopes of gaining some more weight. Is this a good idea and if not, any suggestions?
  5. It is very tough for me to keep a positive attitude, especially when I am not feeling well. I know that one’s mental state relates to their UC. How do you keep a positive mindset?

Medications and Supplements I’m Taking:

Asacol-(6) 800 mg tablets a day (not doing much)
Prednisone- currently taking 15 mg a day (very helpful if your body can tolerate it, but also gives nasty side effects especially when tapering down on it)
Protonix- 40 mg once a day (for stomach acid)
“Jarrow” L-Glutamine pills- 2 a day (heals mucosa lining in colon)
Olive leaf pills-2 a day (help boost immune system)
Glucosamine pills-2 a day (help with joint pain)
“Hammer Nutrition” Endurolytes- 2 pills a day (help boost electrolytes)
“Men’s Health” daily Vitamins- 1 pill a day
Omega 3 fish oil pills- 1000 mg 2 a day (boost immune system, digestive health)
“Soloray” Crandopholis Probiotic- 4 pills a day (good bacteria is a MUST!)
SCD Yogurt- 5 spoonfuls twice a day (good bacteria, boost immune system, tastes better than store yogurt!)
Humira-40 mg injection every other week (this has REALLY helped me sort of get back on track but trying to get off ASAP because of side effects)

written by Sean M

submitted in the colitis venting area




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4 Responses to The Last Hill Is Always The Steepest

  1. Adam
    Adam September 4, 2013 at 6:57 am #

    Hey Sean,

    Thanks for posting your story, Good luck on your goal of getting into screenwriting!! and thanks as well for posting questions.

    Regarding your questions, here is my take:

    1) How to gain weight you asked…
    In my personal experience and most often that of the hundreds(maybe thousands) of UC’ers I’ve spoken with, it is very hard to gain weight when any signs of active colitis are present. (and unfortunately, even harder for people who want to gain weight vs. lose weight) BUT, when you reach full remission, the whole weight gain program is much much easier mainly due to the body becoming more efficient with its evolutionary processes of digestion. I know the frustration you’re feeling with the weight gain, but if possible, I’d focus more on getting into full remission first. (and again, that’s easier said than done when the pounds are just not going up, but for sure doable none the less)

    2) Effective ways for handling stress?

    GREAT QUESTION. First, I’d recommend to read the book “Brain Rules” which I’ve talked about here for years. There’s a section specifically on stress, and its excellent. But, overall, stress is often caused by worry/thinking/wondering/stressing… about things you/we are not in control of. (i.e: how other people react to things involving you, what the stock market is going to do tomorrow, traffic getting nasty on on the 101 Freeway before getting on Ventura BLVD down in LA…

    —So, what’s worked really well for me is recognizing the parts of my life I stress about, and if I have absolutely no control over them & the potential outcomes, trying my hardest not to stress on them for just that reason. (it has helped me a ton, and gotten me into some seriously long runs of hard log poops with no blood and good sleep and all sorts of other stuff)

    3. How do college students manage this?

    Take a peak at Allie’s story:

    https://www.ihaveuc.com/11-years-with-uc-and-going-strong-even-as-a-college-student/

    4. SCD started/stopped, was good idea…?

    Great question, and everyone’s unique with their diet experiences if they go that route. Anybody who tells you “you will get better in “X” days doing this diet or that diet” well, they haven’t met enough UC’ers yet. There’s always the usual questions I’d ask such as, what exactly were you eating? Were you taking medications at the same time? Did you include any breads, sugars, dairy? Were you eating lots of Almond Flour when you started this new diet?

    There’s lots of questions I’d be interested in knowing. But more than that, I’d be interested in knowing “HOW easy was it to follow a Diet for you?” Some people don’t feel like its terribly hard, while others feel like it was harder than anything else they’ve done in their life. There are people I’ve spoken to & met in real life who have had great success with diet to heal their UC, but also told me they stopped doing that and went back to medications and one even opted for surgery because they did not want to regulate the different foods day in and day out. And guess what….That’s just fine. But I’d be interested in where you’re head is at with that question.

    Since I’ve had such great success with diet, the reality is that it has not always been a walk in the park. I’ve had several occasions where I’ve had to backtrack and go back to basics with food. One such incident I’ve detailed in a video here:

    https://www.ihaveuc.com/the-colitis-flare-beat-down-party-getting-out-of-my-flare/

    I guess what I’m trying to say is that going back to a certain diet is always a possibility for you just like it is for anyone with or without a disease. (Just dont do the ALL ALCOHOL diet, which some of us know too much about)

    5. Keeping it positive in the domepiece?

    The hardest thing to do, but we ALL CAN DO IT. If you want to know a real quick way to get positive, do this:

    Go down to your local homeless shelter and volunteer. Just walk in there, and say you want to volunteer. (I’m not joking Sean, you’ll be feeling better mentally real quick).

    Another idea on the same lines. Help out the little old lady carry her groceries to her car. Or hold a door open for someone at your school. Maybe just sit at the door for a few minutes when class is out, and you’ll be feeling better amigo.

    Do you have a disease.?

    yes of course.

    Is this disease going to dictate your life?

    That’s up to you my friend. You and only you will be the one determining that, and I”m betting that it’s going to be you running the show.

    best of luck,

    -Adam

  2. Sean September 4, 2013 at 10:19 am #

    Hey Sean,

    First off, we have the same name, spelling, and disease…twins? Just kidding I already have one (who has no health problems, lucky him..lol). Before I get started, I would also like to point out that after several months of following this site, this is actually my very first post/comment/anything that I’m submitting, so I hope this goes well. My reason for not posting a story, comment, doctor review, etc. is because I feel that my story hasn’t fully unfolded yet for me to share, and I don’t wanna half ass it.

    Anyways, aside from having the same name, I am also a 20 year old college student living with UC (since March 2012)…so I can especially relate. From what I’ve read, your symptoms don’t seem to be very active (maybe 2 BM’s/day with little to no blood, some false alarms but nothing major), and that should be viewed as a positive compared the many other people that deal with much worse. It was only about 2-3 weeks ago where I was having 15+ violent ones/day. I had a scope done that revealed significant inflammation, which led to a 5 day hospitalization that changed everything for me. They found that I had C-Diff as well, which makes the whole situation much more complex (Adam can relate)…but that’s for another day.

    What really changed during this hospitalization was my mindset. I had been in a 5 month flare that was running everything in my life, and while I was mostly positive throughout it, I had my moments of thinking “Why me?” It’s truly a depressing feeling. If you view UC as something negative, then it will anchor you down to rock bottom. However, if you take it as a challenge that life has presented you, make it your job to own/defeat it just as so many on this great site have! The reality is that every single person has there own problems, this just happens to be the card that we (and hundreds of thousands of others) have been dealt, so get inspired to beat it! This motivational mindset will take you very far with not only your UC, but the many other hardships we will face in life.

    Now that I’m done dropping life quotes like some kind of Dr. Phil wannabe…I would like to address the weight gain topic. Yes, it is very hard. There is no sugarcoating that, but it is 100% doable! Diet and exercise are key. You mention that you are working out regularly…awesome to hear and keep it up! Focus on weight training, I wouldn’t even worry about cardio. Do some research for a good lifting regimen that best suites you (I suggest bodybuilding.com). As far as diet, everyone is different. I also tried SCD, glutamine, EVOO, probiotics, pretty much all the big hitters from this website with little to no results. Us UCers will pretty much try anything during our desperate times, lol. What I find best is quite simple. Just do a basic trial and error test on all foods. For example, if you think that milk is a trigger, drink a glass or two and see how it sits. Next day, don’t do it and see how you feel again. Your body will tell you the answer, trust me lol. Another tip would be to keep it ‘low residue’ (avoiding ‘roughage’). This means all raw fruits, vegetables, seeds, etc. Overtime, you will know what works best. Just keep pounding the good food down every 2-3 hours, and if you can handle mass gain shakes, do it! Don’t forget to hit those weights either, that’s just as key.

    I know it’s all easier said than done, and I know this post was way way too long (especially being my first one of all time) but I hope that whoever read all my rambling enjoyed it. Keep that head up Sean, we got this!

  3. Caroline
    Caroline September 4, 2013 at 4:20 pm #

    Sean,

    So sorry to hear you are having a rough time! I can’t imagine going through all of this while I was in college – although I had some rough stomach issues through college, I got to delay the lovely UC attack until my mid-30s. Hang in there!

    Sean and Adam have some awesome points and have given some great advice. I was just diagnosed in January with severe pancolitis – I was scared, depressed, and about 20 pounds underweight. I didn’t want to go anywhere and was terrified that this would be my life. For me, I have found success using a variety of methods – diet/supplements, acupuncture, and traditional Western medicine. I needed Prednisone to jump start me out of my flare – Canasa never really seemed to help me, but once things got under control I seem to do well with Apriso. The bigger thing for me has been diet – I started out with SCD, and loved the bone broths, chicken soup and mushy veggies. However, it kind of morphed into the Paleo Autoimmune protocol, and now I have great success with a more traditional paleo. I eat meats, veggies, fruits, eggs, and small amounts of seeds. Nuts are hard for me, as well as tomatoes and the amounts of chocolate I would like. It’s a learning process for me, every day! I do fish oil, vit D, and astaxanthin for anti-inflammatories, and VSL #3 DS has been a FANTASTIC probiotic for me. I took probiotics before, but could tell quickly that one was a game changer for me. I also mix L-glutamine with it for colon healing. I am doing great – with the exception of daily mucus passing, everything is terrific! I feel better now than I did before I was sick.

    UC is a process for everyone I think – figuring what works for YOU. Everyone is different and it’s a lot of trial and error. Best of luck – this site is a fantastic resource! :)

    Caroline

  4. matt p September 17, 2013 at 3:09 pm #

    Sean,
    hey man I am a college student and also play hockey at my school. My senior year of high school I was so ill that the last month of school I missed because I was so weak and going to the bathroom 5 to 10 times a day, my weight went from a healthy muscular 200 lbs to 185ibs in a matter of three weeks. I was so weak from losing so much blood and everytime I wanted to hang out with friends or go out I would start to cramp up. As most i forgot to keep hanging in there and thinking positive. I know you said you tried the scd but at first i didn’t see results it took months. i had the symptoms from uc so long that i forgot what it felt like to be normal. I know you probably don’t want to go back on the diet but i highly suggest it. I wasn’t able to go out i wasn’t able to play my sport. I would say around 3 weeks ago i got my going to the bathroom down to one time in the morning, i play hockey and can travel with team with no worries and i can go out and do whatever i want, i’m better than i used to be before i got uc. Also my biggest concern was having to run to the bathroom while in the middle of a lecture but i now do not have to worry about it thanks to sticking to the scd. Its tough i know how it feels, I’ve been on it so long i wanted to just forget it its so frustrating. Now that i stuck with the diet so long and am now great i do not label myself as someone with uc, now i just say i eat healthy to stay in shape and i can laugh at jokes that would bother me before.
    Matt

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