Living with UC and New to This Site

Introduction:

I am 24 year old male. I was diagnosed in the beginning of January with UC. It sucks! It came on so fast and I have never even heard of it until I was diagnosed.

Some more about me:

Born and raised in Maine. Love the outdoors.

dock at Owl's Head

common day down by the lobster fishermen. (taken by Adam near Owl’s Head, ME)

Symptoms:

diarrhea, some blood, sometimes cramping on the toilet

Living with UC and New to This Site

New to this site. Was diagnosed in the beginning of January 2013. Came on fast. Noticed blood in stool around Christmas and a couple weeks later was recommended to have a colonoscopy. Was put on Asacol and prednisone and suppositories. Tapered off prednisone and all my symptoms were gone for about a month and a half. Ended up switiching to Apriso because of cost. Felt okay for a few weeks and then was back to going to the bathroom 10 plus times a day. Was given prednisone. All symptoms went away. Switched over to Lialda. Been on Lialda for a few months now. Some days i still go 10 times and other days around 3-6. While I am at work its realy not on my mind and I try to stay busy so luckily it really hasn’t bothered me much at work. I think its a psycological thing. My house is my safe zone. Doc says next step is immunomoduators. I have an appointment in a couple weeks.

Also bought the BTVC book and started on that last week.  I do have a question about the intro diet. It is still a little unclear to me what I can eat for the intro diet. I have been following this: http://pecanbread.com/p/how/introdiet.html.

Basically I have been eating the chicken broth soup, broiled beef, turkey, and pork, eggs, and gelatin made from 100% welch’s grape juice. Am I on the right track? Should I be strictly eating the chicken broth soup and drinking water only? Anyway if I don’t see signs of improvement by my next appointment, I think I might start on the immunomodulators. Anyone have any luck with that? Also I have left sided UC. Is that a milder case or is it all just the same? Also while I was waiting on the book I was eating only SCD legal foods and baking muffins and banana bread with almond flour. It was surprisingly pretty good. Anyway I am still new to this site so I am sure I will post other stuff.

Medications:

Lialda 4 pills 4x daily
sometims loperamide (immodium)

ultimate 10 probiotics

D3 vitamins
fish oil (sometimes)

written by “Male from Maine”

submitted in the colitis venting area

12 Responses to “Living with UC and New to This Site”

  1. AdamAugust 29, 2013 at 5:26 am #

    Hey there Mainer,

    Thanks for sharing your story. Since I know you Maine folk are a tight nit group, definitely check out the stories from Shelly. She’s also from Maine, and has been part of this site from nearly day one. here’s a link to those: http://www.ihaveuc.com/author/uc-lifer/

    As for your questions on are you going about things the right way with starting SCD…I think you’re on the right track. A few things I would do differently however are with regards to the Grape Fruit Juice. I drink only water when starting SCD. Way too much sugar in pretty much everything besides water, so I keep it simple. It’s too easy to get carried away with too much things like grape fruit juice (which many people frankly can’t tolerate) because once you get that taste of sugar in your mouth, the brain instantly wants MORE…

    Also…Almond Flour… Best to hold off on that until you feel and see some serious signs of healing for several weeks/months. I’ve spoken to some people who have tolerated it well early on, but I’ve also spoken to hundreds who have not tolerated it well early on and paid the price of symptoms getting worse.

    I wish you the best, KEEP YOUR HEAD UP and thanks again for sharing what’s happening with you,

    -Adam

  2. bevAugust 29, 2013 at 3:27 pm #

    Great that you are on a probiotic. It matters when you take them. They must be taken on a completely empty stomach, and then no eating (or drinking anything other than water) for at least half an hour afterwards.

    UC has to do with not enough good gut bacteria, inflammation, in some people diet, the over use of antibiotics…there are so many factors as to why we get this condition. Probiotics are essential. Something for inflammation is essential (astaxanthin, vitamin D, curcumin…there are a bevy of natural anti imflammatories), healing the ulcers is also essential. L-glutamine astually heals the mucosa of the colon, so it is a great thing to take.

    I do probiotics, L-glutamine, and astaxanthin…and NO MEDS. I have had UC for 15 years, and I am not on meds any more. Each one stopped working, or never works at all. When the doctor said the next step was immune suppressors…I opted out of meds forever. No way was I taking those. I don’t believe that’s the way to manage UC, because they are dangerous…and they stop working too.

    You will learn that meds just don’t work long term…and they all have their side effects. Just my two cents.

    Cheers,
    Bev

    Cheers

  3. GavinAugust 29, 2013 at 6:17 pm #

    Thanks for the comment Bev. Do you currently have any UC symptoms? Do you treat your UC with probiotics, L-glutamine, and astaxanthin only? No special diet?

    Gavin

  4. bevAugust 29, 2013 at 9:59 pm #

    Hi Gavin,

    Yes, I am currently symptom free!

    I only do the naturals now…no special diet at all. ( I do avoid straight wheat…just because it actually causes me to bleed a bit if I eat like, a bowl of shredded wheat cereal. I can eat wheat bread or a bagel, but not a 100% wheat cereal). I eat whatever I want, other than wheat. I am not a celiac, and I do eat gluten, just to be precise.

    I was on asacol, steroid enemas, and various other benign meds for the first 13 years, and they actually made me feel even worse, although my doc said it was the UC…I finally went off of all of them when they really weren’t doing anything other than making me sicker. I had tried a good probiotic and the L-glutamine while I was contemplating stopping the meds, and got feeling so good that I just stopped the asacol. Within days, I was feeling human again…I forgot what that was like!

    Cheers:)

  5. GavinAugust 30, 2013 at 4:07 am #

    Wow. That is awesome. I might have to try this L-glutamine (never heard of it before). I would love to be symptom free and have no special diet!

  6. bevAugust 30, 2013 at 7:56 am #

    I know, right? After almost 14 straight years of hell, it’s wonderful (and unbelievable, frankly) to feel this normal again.

    I just hope it works as well for you (and everyone else) as it has for me.

    Both the probiotic and L-glutamine should be taken on an empty stomach. I take the probiotic first thing in the morning, and then no eating for at least half an hour. I mix the powdered L-glutamine in a teaspoon of juice (for taste) around 11am, again on an empty stomach.

    Cheers,
    Bev

  7. shelly in maineAugust 30, 2013 at 4:59 pm #

    Hey fellow Mainer…it is me the aforementioned, Shelly from Maine! Sorry to say…welcome to the site, but welcome to the best support place ever from us UC’ers who know and share what is real!

    Everything they said above…ditto. Try and keep a journal of foods, meds, natural meds and bm’s. That will help a lot. The pecanbread site is great…I actually used the “stages” sections the most. The almond flour may actually be messing you up a bit…sorry to say. You may want to hold off on that. I waited a long time to intro that and knew immediately almond flour and I were never going to be great friends! And I don’t really like it anyway, luckily. :-) I do use it some and cut it with coconut flour. Comfybely is another great recipe site and against all grain website.

    Oh and alcohol is a no-no!

    Good luck with everything. Keep us posted. Be patient and remember just baby steps with UC…any little bit of improvement is improvement just the same.
    Hang in there!
    Best, Shelly

  8. shelly in maineAugust 30, 2013 at 5:23 pm #

    Oh and Adam is a Mainer at heart!

  9. GavinAugust 31, 2013 at 5:30 am #

    Thanks for the advice. This site is really supportive. I picked up some L-Glutamine last night. Gonna give that shot too. Probably add another veggie into my diet soon and a fruit. I haven’t had any almond flour since i officialy started the diet. Before the book came I just ate the legal foods.

  10. RobSeptember 2, 2013 at 4:11 am #

    What is currently helping me out of a current flare is upon waking I take glutamine, probiotic and fish oil. I dont eat or drink anything for a half hour and then eat some breakfast. I take the same before I got to bed as well. Been having some normal BMs so can’t complain about the frequency of the supplements. Just my .02

  11. BevSeptember 2, 2013 at 7:49 am #

    Great advice Rob! I concur!

    It’s working well for you because you are taking them on an empty stomach and then not eating for at least half an hour afterwards….very important!!

    Bev

  12. GavinSeptember 2, 2013 at 9:11 am #

    Hey Rob,

    Is that all you are taking? No Meds? What about a diet?

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