Where to Get Started? Very Overwhelmed!

Introduction:

Hello! I am a 30 year old Dental Assistant, living in Virginia. I got married a little over a year ago to a hunky fireman and became a first time mommy in November to a beautiful baby girl! I love my job, love my life! Looking forward to getting some control of this disease!

Some more about me:

I love spending time at home with my family and friends. Cooking is a huge passion of mine, the food network is usually on! I believe laughing is the best medicine, making people laugh always makes my day :)

Symptoms:

Currently I am experiencing diarrhea, severe blood, mucous and gas….pretty much every gross symptom that’s out there lol

Where to Get Started? Very Overwhelmed!

Hello there everyone, and Adam! I am so glad I found this website, I have been searching this site for suggestions, answers and any kind of insight I can find on how to get some control of my UC. My symptoms started the month after my daughter was born, December 2012. I saw my general physician shortly after I noticed the blood (really freaked me out!) and was sent to a local GI. Got my colonoscopy in February 2013 and was diagnosed with the UC! My Dr started me on Asacol and mesalamine enemas, I started to feel better and was relieved! About 2 weeks later, I started with HORRIBLE cramping and worsening symptoms, I stopped the Asacol and enemas and started to feel better, so I was thinking it was the medication giving me a bad reaction. I was doing pretty good for about a month when symptoms began again, tried Asacol/enemas again and after only 2 days I was in so much pain I couldn’t bear it. The Dr then did agree that he thinks the meds were to blame, and we decided to give me a break of meds for a while and see what would happen, was doing fine until about a month ago. This is the worst it’s been so far, the blood loss is scary for me! I am now taking 40mg Prednisone once a day, been on this for 3 weeks with no relief. I have been reading about the SCD diet and am willing to try anything. My question is, do I tell my GI that I want off the steroid and am going to try controlling this with diet? Or do I go about this without him? I can’t imagine he would be pleased that I don’t want to be on meds for the rest of my life (how else do they make money??). Do I need to quit the steroid completely before trying this? And why hasn’t the steroid worked? I kinda was under the impression that it was a sure-fire fix?

I am really bummed that this disease is going to change my entire life. I love to eat, I love to cook, and although I will still be able to do both, it just won’t be the same. I am lucky to have a supportive family and husband who will help me through anything. I am starting to get overwhelmed at all the information out there, I wish I would just know what was going to work! I am not a patient person, so coming to the realization that curing myself over night isn’t going to happen has been hard. I would love some feedback on how to get started with diet changes etc…I plan on ordering the SCD diet book soon, but am a little worried on how extreme it is. Thank you everyone in advance!

Medications:

Currently on 40mg Prednisone once/day .
Bad reactions to Asacol, Mesalamine enemas. Steroid suppositories did not help, nor did Canasa. So far I’ve not gotten relief from anything!

written by “Dental Assistant”

submitted in the colitis venting area

19 Responses to Where to Get Started? Very Overwhelmed!

  1. Don
    Don July 24, 2013 at 9:46 am #

    Hi DA! Your story brings back a lot of memories for me. The feelings of fear, confusion, exasperation, and hopelessness can be overwhelming! When I was first diagnosed I had an unsympathetic doctor who simply told me I would have this for the rest of my life. Ok thanks a lot doc! I cried after that phone call! I have experienced 2 hospital stays of 5 days each since then and am currently doing well with probiotics and diet (SCD). Predisone always helped me a lot but 40mg wouldn’t do the trick. I needed twice that much! Getting off of Prednisone was a problem too until I learned that when you get down to 5mg you have to decrease the amount very, very slowly (I was taking crumbs of the pill at the end) until your adrenal gland can begin to produce it naturally again. I stayed on Prednisone as I started the diet and only began to wean off when I felt better. The diet can seem overwhelming at first but it’s really pretty simple. The list of legal/illegal foods can be found on the Breaking the Vicious Cycle website. Just remember that this is not like other diets where you can cheat a little. You need to be absolutely diligent about not eating anything you are unsure of. The sneaky ingredients like natural flavors and spices got me for awhile. I know the diet made a huge difference for me. I hope you can find relief with it too and it’s great that you love to cook. Good luck and feel free to ask questions. This is a great site and I really appreciate Adam for getting it out here!
    Take care,
    Don

  2. bev July 24, 2013 at 4:15 pm #

    Hi,

    I love what you said about being ‘bummed’ that UC could change your entire life. I felt that way.
    These days, after having it for 15 years, I only let it change my life in one way. Only in that I know that I have it. That’s it. Don’t get me wrong…it changed my entire life for the first 14 years. For sure. Those first 14 years that I cannot get back. I felt sick and horrible, on the meds. They never really helped me or put me into remission. Meds will only help for awhile, if at all. They don’t fix the problem, only Band-Aid the symptoms for a short time. The UC med merry-go-round, I call it. Doctors really don’t know how to treat it, so they try every med for UC until there are no more, and usually your last option is colon removal…(which is fine, by the way…at least the UC is gone for sure then)! I am not willing to lose my colon, however.

    Now that I am not on meds, and have so fortunately attained remission through a good probiotic and L-glutamine, UC is NOT ruling my life any more. I thought it always would, but it isn’t. I am so happy that it can actually be at the very back of my mind nowadays. I hope and wish this for all of us who suffer so with this condition.

    It is possible. I never believed it would be, but for 15 months now, I am symptom free and feeling normal again.

    Thank you for posting your story. Your sense of humor and determination will go miles in helping you feel better about this condition, that yeah, we’ll have for life…but it doesn’t have to rule it. Trust me.

    I take one ULTIMATE FLORA CRITICAL CARE by RENEWLIFE probiotic every day, on a completely empty stomach (as soon as I get up) and then no eating for at least half an hour. About 11am, or an hour before lunch, again on an empty stomach, I take fermented L-glutamine powder, mixed in about a teaspoon of juice, for taste. The probiotic repopulates your good bacteria, which is imperative, and the L-glutamine heals the mucosa of the colon, thus healing the ulcers.

    Cheers,
    Bev
    :)

  3. Tim July 24, 2013 at 9:02 pm #

    Check out http://www.bravoprobiotic.com for UC. Haven’t tried it yet but plan to

    • bev July 24, 2013 at 9:52 pm #

      Wow! Thanks Tim!!

      Sounds promising! Can’t wait to maybe try this probiotic.

      :)

  4. Joanna July 24, 2013 at 9:44 pm #

    I woukld try scd now because it will take a while to get off prednisone anyway. That way you might feel better as you taper instead of worse.

    Your doctor probably wont care what your diet is so i wouldnt mention it. His job is to give you medicine.

    You can still be a creative cook on scd though. Most of what i eat is simple but the foods are so pure and delicious as is. There are a lot of scd recipes and websites so you wont get bored. The intro diet is the hardest part of it which is mainly gelatin, eggs, curd, broth, and apple cider.

  5. Lynn July 25, 2013 at 6:40 am #

    Hi Bev –

    Trying to help my son with his uc, someday he will write his story but for now just wanted to ask you besides the Ultimate Flora Critical Care by Renewlife and the fermented L-Glutamine do you take any other supplements?LDN? And in past posts which I can’t find you had mentioned taking another supplement.

    My son is in for a fecal transplant study here in the Midwest, he hasn’t committed yet but considering. Would love to have input from any of you on this topic.

    • bev July 25, 2013 at 6:56 am #

      Yes, Lynn, I do take LDN at bedtime. Funny you should mention that…I tried to go off of it about a month ago, and the UC symptoms came back after about a week and a half!

      I really didn’t think that it was doing anything for me, but evidently, I was wrong. I am back on it now, and am in remission again!

      I think the probiotic helps with the good bacteria, the L-glutamine helps with the healing of the ulcers, and the LDN straightens out or regulates your body rhythms while you are sleeping or something. I just know that I need to keep taking it all…including the capsule of astaxanthin every day for inflammation. Four things. Even when I feel like I am ‘cured’ I now realize that I am not. I cannot let my guard down, as much of a burden as it is, I must keep taking what I am taking.

      I would jump on the fecal transplants if I were him. If I could get them I would! I wonder and hope if that’s the only true ‘cure’ for UC…

      Bev

      • Lynn July 25, 2013 at 8:16 pm #

        Hi Bev-

        Thank you for the information on what works for you. Waiting to hear if our son has gotten in for the fecal transplant study. Will keep you all posted on how the story unfolds. Uc is quite the disease! He is 19 and just can’t do all the things he wants to…travel and go places with friends…on a boat…for long road trips…to Europe to visit his sister.

        Bev you are an encourager and confidant and a true kind and caring person.

        • bev July 25, 2013 at 8:39 pm #

          Lynn, it pains me that your son is so young, and isn’t able to fully enjoy his youth and all that goes with it. UC can make everything so difficult. So difficult…

          Thank goodness I did not have UC until my mid thirties. I truly hope he will find remission, and soon. He deserves to live his life. Everyone does!

          Bev

      • Tim123 July 25, 2013 at 9:29 pm #

        Hi Bev,

        I did not try LDN yet. Next I need to try that. I am in a small flare now. What do eat during flare when you had a flare last month.

        • bev July 25, 2013 at 9:47 pm #

          I eat anything that I want, Tim. I always have done. The flare didn’t even last a week, because I started the LDN back up as soon as I realized the UC was starting up again.

          I have never changed my diet per se, although when I was really sick with UC, vegetables and spicy foods really hurt. I should not have eaten them, but I did anyway! I’m kind of stubborn that way…I like to eat what I like to eat, no matter what…

          Bev

          • tim123 July 26, 2013 at 10:00 am #

            Thank you.

  6. Ashton July 25, 2013 at 9:18 am #

    Hi
    Weve all heard of the outrages claims our doctors make in regards to this desease and how u have to be on medication for the rest of your life and guess what, things just go down hill from there right? Well id like to answer that and that a big WRONG !!
    Let me tell u about my story, but before i do that and throw out all the misconneptions and reducate ur self cause trust me no one and i mean no one cares about curing ur desease more than u do.
    Now ill begin, im a 40 year old male living in Australia; I started bleeding and cramps and alll horrible things that assosiated with UC way back in October 2000. The desease seems to come at u when u need to be healthy the most, i was just married for about six month, trying to run a small business and save up for a house than GOD blew a hole into my plans, my first bout was so sever that i got hospitalised on a drip fo a couple of days and than came the great news U HAVE UC and u need to take 3 grams of Salfosalizine for the rest of ur life !!!
    For the first three years it was a roller coaster ride; but i noticed thing were getting worst and worse, by the fifth year the doctor wanted to put me the dreaded Cortizone and if that didnt work to rip out my colon. I never forgot the day i left his office with prescription in my hand, thank god i never took them. About a week later i got so bad thatbi was going to toilet about 20 times a day, one of my friends that had heard how sick i was told me that a doctor in canada was prescribing medical marijuana to calm things down. At first i brushed him off and said dont be rediculous, couple of days later i thought i was going to die and told my wife to ring the friend up and to c if he can source some for me, my last option. A day or two later he came by my house and said to my wife that he had a marijuana cigaret for me. When i was on the toilet i lit up and with in a couple of drags i could feel the relife so much that i started walking around the house, my wife panicked and said get back to bed but i told her that i felt 100 times better. And that was about 8 yrs ago now, ive never felt better in my life and live virtually desease free. I eat what i want even have a couple brewed coffes per day. Also whilst i was researching the side effects of marijuana i found that this was a mirricle plant with no side effect. Im looking to start jucing it in shots which do not get you stoned. Ive also attached a youtube clip to inform u of the mirricle its been for many people. One final note is that i have given this information to u as its saved my life what you do with it from here is purly ur choice. God bless
    Please search on u tube cannibus cure

    • Joanna July 25, 2013 at 9:50 pm #

      How much weed did you use and how often? Do you still use it? Ive read infestion it is most helpful for our disease. Also, do you use certain strains?

      • Ashton July 26, 2013 at 3:13 pm #

        Hi
        Yes i still do smoke it, it depends if im being indulgent in my diet, if ive drank couple of coffees and had sugery foods thsn id have to definitly have at least half a joint, but if i stick to a natural hygine diet such as raw organic fruits and vegis than id say one joint a week wold suffice, every one is different so a little twiking is required to gt the ballance right. In regards to strains i use what i can get , u c its the THC that is the immune modulator there for smoking leaf would be no good as there is not enough of it.
        Please youtube search ” LEAF curing desease with raw jucing of cannabis”
        Youll find it very informative.

  7. bev July 25, 2013 at 12:44 pm #

    Awesome story Ashton! I’ve never tried pot, but this info does not surprise me at all. It can help in other illnesses…why not UC?

    Cheers, and thanks for posting:)

  8. Rob July 25, 2013 at 2:35 pm #

    When I say I follow “SCD loosely” it feels like I offend most. Sooo here is what is working for me. I am currently on a 30 billion probiotic and glutamine, thanks Bev! I dont eat anything processed or packaged like pop tarts or tv dinners and such. I eat fruits and veggies as a side and snacks to my meats, chicken and fish. I.keep my fiber intake low to void gas. So no beans. No milk cheeses grains rice or corn. This has been working for mr for over a month. I cant give up on breads and rice just yet so I will experimenting soon. I am grateful this is working for me because it is not too restrictive. Before this I was on soups and broths to clear out my bowels and start “fresh”. I pay attention to my body as I add new things and revert back to soups in extreme cases if something doesn’t agree. I tried brown rice as a side for dinner two nights in a row… TORE me up! I will be trying white rice soon though :) I am just stubborn that way.

    • bev July 25, 2013 at 2:49 pm #

      Thank YOU, Rob!

      You made me day :)

    • Don
      Don July 30, 2013 at 6:51 am #

      Rob, I don’t think anyone here gets offended by you saying that you follow SCD loosely. Have you read Breaking the Vicious Cycle? It’s important to understand the science behind the diet. Many who claim SCD didn’t work for them didn’t understand it and didn’t follow it correctly. The main idea is starving bad bacteria by not eating any illegal foods. These foods have been studied by Elaine Gottschall and found to contain complex sugars that are not able to be digested properly by people with bowel problems. Therefore eating even a miniscule amount of an illegal negates the diet. We all know that what works for one doesn’t necessarily work for someone else. Following the SCD diet loosely is more of a “following a restricted diet”.
      Hope you are well,
      Don

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