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

Holy crap…I have what?

Kyle from Philly with UCIntroduction:

I’m about to turn 22 in a week and I was diagnosed with ulcerative colitis about 2 days ago. I’m originally from Philadelphia but now live in Utah while going to school at BYU.

Some more about me:

I used to love to play sports, lift weights and workout. All I did growing up and throughout high school was sports, from football, to baseball to lacrosse. It was a huge part of my life but symptoms have gotten so bad that I haven’t been able to do any of that in months! I’m looking forward to do them again soon. I also like to play guitar in any spare time. Other than that I’m pretty much a nerd and now focus all my attention to getting good grades in college and trying to get into medical school.

Symptoms:

I pretty much have all the standard tell tale signs of UC I guess. Like over 10 lose bowel movements a day. Some with blood which was what really worried me. I’m always pretty tired and sometimes nauseous after eating. Sometimes, like at least a couple times a week, I get these terrible cramps where I just can’t even stand up and I have to just lay on my side and curl up in a ball. There’s also the constant feeling like I might have to run to the bathroom just to make it in time, so I’m always nervous wherever I am if I can find a bathroom.

Holy crap…I have what?

All my symptoms started gradually a few years ago when I was living in Ecuador serving as a missionary for the LDS church. Naturally I thought it was just a parasite since I was in a third world country. I was told to take medication that would kill any living stuff in my intestines which didn’t help. I figured when I got back to America it would eventually just get better whatever it was.

Well it has been almost a year since being back and I still wasn’t better. So I went to the doctor and they had to get my colonoscopy 2 days ago and here I am now. When the doctor explained to me what it was all I could think was “holy crap.” I’ve never had any health issues in my life before.

I’m not going to lie, my first reaction was relief to finally know what the heck was going on, but once it actually set in I got really sad. Kind of like a feeling of hopelessness. I went to buy the first dose of medication and they told me it was almost 200 dollars for a months worth and that was like a dagger in me. I mean, I’m a college student who works part time to maintain myself and am cutting it close as it is. Also, just from some of my classes I remember learning about corticosteroids and their effects on the body. So the fact that I was about to take this drug really freaked me out.

So I called my parents and filled them in on the situation. We talked and had a good conversation and a nice little cry together. But it wasn’t the end of the world. Sure this isn’t a good thing and it’s going to be hard to deal with, but that doesn’t mean I can’t have a full happy life and accomplish all the things that I want to.

Well, after looking stuff up on Google and Youtube I found information about the book Breaking the Vicious Cycle and the Specific Carbohydrate Diet and finally this site. I was seriously skeptical thinking this guy was just out to make money but started reading and found it was a great help to me. I also found that Adam’s video made me laugh when he was talking about wanting to drop bombs again like when he was a kid. That’s exactly how I feel!! Anyway, it really lifted my attitude and I want to get off this medication as soon as possible and start doing the specific carbohydrate diet. So let’s start treating this thing!

Medications:

Asacol
Prednisone

I’ve only been on them for 2 days and don’t really feel different yet, although my doctor was emphatic that after at least 3 or 4 days I’d feel great. So we’ll see.

written by Kyle

submitted in the colitis venting area




11 Responses to Holy crap…I have what?

  1. Iqbal Naiyer June 26, 2013 at 6:15 am #

    Hey Kyle, Sorry to hear that you have diagnosed with UC well same like you, I got diagnosed last month on may 31, 2013 with severe Pancolitis ( UC) and was shocked and surprised as first I never heard of this disease and second no one in my family had this disease but now I got it so I accept the fact and learning to live and managing this disease, Yes SCD diet is working for me, I am also Taking medicine as listed below.
    1. Prednisone 60mg (tapering now on 30mg)
    2. Asacol 800HD 2tab 3x a day
    3. Canasa 1000mg (bed time)
    4. Omeperazol 40mg 2x a day
    5. Lopermide 5mg (2-3 tab 3x a day or as needed
    6. VSL#3 DS-(20 Pack) – Prescription Only pro-biotic
    7. Non-dairy Saccharromyces Bolardii+Mos pro-biotic,
    8. Theralac (bio-Replenshing pro-biotic),
    9. Vitamin D,
    10. Omega 3 fish oil, and
    12 Vitamin B12
    13. lorazepam ( for sleep)

    Please take care specially the diet and take a notes what’s working and what;s not so you can avoid those food. Give medicine a chance and as your doctor said 3-4 days you feel better and I am sure you will.

    This is a wonderful very educational and very informative site to learn and get educated about this disease and folks are very helpful specially ADAM.

    Wishing you best and for faster recovery to you Kyle and all the folks who have this disease.

    Iqbal ( San Francisco)

  2. Violet June 26, 2013 at 6:46 am #

    Hi Kyle-
    Hate to say Welcome cause we all know its not the best thing to be welcome too. I’m sorry about your diagnosis as I think all of us would say we wouldn’t wish this on anyone. I’m going on 2 years post diagnosis and its been a roller coaster ride for me. I hope you can get your symptoms under control with ease. You are on the right track with the books and diet. I’m just now starting to go that route and I’m hoping to get my symptoms under control soon. When I was diagnosed I had never heard if the disease and my response was “So, when will it go away?” I got the look and got this is a lifelong illness but is easily treated with meds answer. Needless to say, my doc was wrong on the easy part. I am two years into this and still no results so I’m now looking into natural alternatives.

    Of all the advice in the world I can give is to stay positive and talk about it. I cried daily for months after being diagnosed cause I couldn’t believe what I was experiencing in a daily basis and was tired of being tired all the time. Many wont understand what you’re going through but there are plenty of us out there that can talk with you. Lots of forums and chat groups. Any questions or just want to vent there’s a whole community out there to talk too!

    Good luck to you!

  3. J June 26, 2013 at 8:18 am #

    Hey Kyle,

    Sorry to hear about your diagnosis. I’m a 29 year old male and have had UC since Jan. 2012 when I was first diagnosed in the hospital. I tried almost all of the medications that my doctors recommended, but none of them seemed to work and I eventually had to have surgery in March 2013, so currently I have an ileostomy and am wearing a bag, but am now feeling close to 100 percent healthy and normal again.

    As a younger person who has dealt with UC for more than a year, let me offer a few suggestions:

    1. Try and be patient. It can take months or years to find a medication, diet, etc. that will be effective for treating UC. Also, UC affects everyone differently. Some people see a huge improvement just from changing their diet or by taking a probiotic or two and other people like me, can try almost all of the typical medications, try diets, probiotics, etc. and still need surgery.

    2. Don’t be surprised if you feel kind of depressed sometimes about having UC. It’s pretty normal for people to begin to feel kind of depressed after awhile. I have read many stories and comments on this site and others where people talked about feeling kind of depressed when they were dealing with UC. I certainly felt kind of depressed when I was feeling really sick with UC. For me, it was just hard when I was feeling bad each and every day for weeks or months at a time.

    3. Not everyone feels okay about wearing them, but wearing Depends was a good decision for me. In my experience, no one can tell that you’re wearing them and they made me feel like I could actually get out of the house for awhile without constantly worrying about trying to make it to the nearest bathroom in time. And if you’re wearing them, even if you don’t make it to the bathroom in time, they do work really well so that you can get to a bathroom without anyone knowing that anything is wrong.

    4. Make sure you get enough sleep. During times when I was feeling really bad, I would usually wake up at least 2-3 times during the night.

    5. It was also helpful for me to pack an “emergency bag” and put it in my car so I would have it around when I went somewhere. I just put one or two extras pairs of shorts/pants, boxer shorts, toilet paper, etc. in a small backpack or gym bag, so that I had extra clothes in case I happened to have an accident in public.

  4. Allison-3
    Allison June 26, 2013 at 11:32 am #

    Kyle-
    You seem super optimistic and highly motivated. You can totally whoop UC!
    Obviously, you are doing your research and making really informed, great choices.
    Prednisone got me out of a terrible flare and I chose to remain drug-free from there on and 6 months later, I am feeling pretty good. Working and exercising again!
    I also follow a loose SCD… I eat a few grains and potatoes here & there. I take probiotics, liquid minerals, Vit D, curcumin, l-glutamine and stay alcohol and coffee free. Everyone on this site has great advice and most of all each other’s best interest at heart. This site has been a beacon of strength and hope for me when days seemed dark.
    If nothing else, UC is an opportunity to take incredible care of yourself physically, spiritually and emotionally. Ask for support and help- it sounds like you have a wonderful family to boot.
    You are off to a great start. Be patient and stay ever hopeful.
    Wishing you a speedy recovery and a return to your active lifestyle,
    Allison

  5. MarkFN June 26, 2013 at 3:56 pm #

    Kyle,
    I am actually from Philly too, where did you go to high school? Anyways, I got diagnosed with UC 4 years ago, Im 27 now, and exhausted every diet/supplement/pharmaceutical/alternative option available and then I finally found out about fecal transplants and was cured within 10 days. I wish I had the knowledge of FT when I got diagnosed and the last 4 years of my life would have been tremendously different. While all the suggestions people will give you about fixing your diet or trying different drugs might help, they are only temporary and most likely will fail in the long term. You need to reset your bacterial environment in your colon. I would assume that if you just got diagnosed you dont have any perspective yet on how bad this condition can really get…and believe me you dont wanna find out. If I were you I would go ahead and do fecal transplants right now, not wait and try the endless list of supplements or food restrictions you most likely will do if you are beginning to research the SCD and such. These diets are great, I am not saying they are worthless and they are a thousand times healthier than the Standard American Diet in the long run, its just the need for super restrictive diets becomes unnecessary once you can reset your colon’s bacteria…you can go ahead and live like you did before you started having any symptoms. Its scary to be told you have an incurable disease now all the sudden and despite what the doctors say, despite what some people on this website may say, colitis isnt a disease, it is condition that begins and ends with the bacteria getting out of balance and the fastest, easiest, cheapest way to get rid of it is by doing fecal transplants. Seriously consider doing this before you do all the other options out there…

    • Kyle from Philly
      Kyle July 18, 2013 at 11:52 am #

      Hey man that’s awesome you’re from Philly too. I grew up in broomall just west of Philly and went to high school at marple newtown. What about you?
      So I feel like the medication isn’t really working and to be honest the scd is too hard to live by as a college student. I’m taking probiotics and l glutamine with the medicine but I still feel like crap everyday haha. You’re comment interested me a lot because I’ve been looking up information about fecal transplants. I just have some questions for you if you don’t mind. First did you just do it on your own or did you find a doctor who would do it? How many times did you do it? How long ago did you do it? Have you had any symptoms return since you did it or do you still continue to do them now? If it has been a while are you planning on going back to get a colonoscopy to see if you really are healed?
      I’m planning on doing mine pretty soon here. I just can’t keep living the way I am now. It’s becoming too much and from the research I’ve done it seems like these fecal transplants usually work an work quickly and effectively. I’m really excited to try it. The worst that can happen is that I’ll still be the way I am now haha. Hey thanks for takin time to respond.

      Kyle

  6. bev June 26, 2013 at 3:59 pm #

    Hi Kyle,

    I have had UC for almost 16 years. For the very first time in all of that time, I feel like I am ‘cured’. I took drugs (namely asacol) for the first 14 years straight. It made me feel worse, only I didn’t realize it was the drug, and not the UC. I am currently in full remisiion and MED FREE.

    My advice is to first start a GOOD at least 50 billion strain probiotic right away. (I recommend ULTIMATE FLORA CRITICAL CARE by RENEWLIFE). You must take probiotics on a completely empty stomach, and then not eat for at least half an hour. Also take fermented L-glutamine powder. once per day, again on an empty stomach.

    These two things saved me! The doctor told me UC is a disease that I would have forever. Now, I do not consider it a disease…I think it is merely a condition that we must heal. The fermented L-glutamine actually HEALS the colon and the probiotic repopulates the good bacteria that we all NEED.

    Cheers, and welcome to this site. You will find a ton of fab info here. You do not HAVE to do what the doctor tells you, but instead, use the doctor as a guide. You are the boss. You decide how you want to approach this condition that you have somehow acquired.

    Bev

    • Kyle from Philly
      Kyle July 18, 2013 at 11:55 am #

      Hey Bev,

      So I took your advice and started taking that brand of probiotic and also the l glutamine on an empty stomach. I was hoping to see some better results but it seems like I’m kinda stuck feeling the same. I’ve been taking them along with my medication for about a week now. Still a lot of urgency and diarrhea and blood. Any suggestions? You seem to have yours under control pretty well.

      Kyle

      • bev July 18, 2013 at 3:41 pm #

        Hey Kyle,

        First…what Ken said. You could try and add in the EVOO (extra virgin olive oil). I don’t take it, but it seems to work for some. I also take a 4mg capsule of a powerful little anti inflammatory called astaxanthin…I know! A mouthful, isn’t it? You can google it and read about it. I hardly ever mention it, but I have tried to stop taking it, and I get cramping…so it must be doing something.

        You say you are taking the probiotic on an empty stomach and then not eating for at least half an hour, right? I wish you were seeing better results…I wish I could offer even more advice…

        Hang in there is my best advice…it can take longer than a few days or even a couple weeks…

        Bev

  7. Ken June 28, 2013 at 12:22 pm #

    Kyle,

    I want to start out saying that while we all have basically the same symptoms, the way we each respond to various treatments differ greatly. Just another of the mysteries of this affliction.

    I was diagnosed last February, and while on Asacol, saw very little improvement over the next 10 months or so. In a last ditch effort to avoid Prednisone, I found a couple success stories on this site concerning supplementation and put them into action.

    One was Bev’s (see her comments above). The other was Graham’s thread about extra virgin olive oil. I take Glutamine, probiotic, and a couple tablespoons of EVOO every day. I change up some anti inflammatories such as Boswellia, flax seed oil, and Krill oil for good measure. Last but not least a multivitamin with Vitamin D and Folic acid.

    I’ve been “normal” now for 6 months without any drugs. I have been able to return to an active lifestyle during this time, and can eat anything again.

    I would recommend you give supplementation or diet a try. Many of the Meds have nasty side effects and stop working over time, so you have nothing to lose.

    Good luck!

    • bev June 28, 2013 at 2:33 pm #

      Well said, Ken.

      I concur!

      :)

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