Ulcerative Colitis Tips


Ulcerative Colitis Tips PLUS iHaveUC Newsletter




My Adventures In The Land of UC

marty f fullIntro:

I am a husband, father of 3 wonderful children, CEO of 2 growing practices (financial advisory and tax/accounting) with a great business partner & friend, exerciser, basketball player/coach, and a good movie & good book enthusiast.

Originally diagnosed with ulcerative colitis back in July 2013 (right in the middle of vacation!).

Twitter handle is @martyfed.

Some more about me:

I am originally from Northeast PA in the USA. Lived in NC, SC, and MD in the USA as well. I enjoy most sports, taking care of our business clients, pro wrestling, eating healthy, walking my puppy, blasting out 100 pushups in the blink of an eye, and taking a good run/walk with my wife.

My friends call me “Marty the one-man party” because I am a dancing machine – I am available for entertainment at most weddings (I don’t even need to drink alcohol to have a good time) ;-D

References are available for those who think I’m kidding…

Symptoms:

Currently I am in remission since shortly after my original treatment – thanks be to God!

Marty’s Story:

Diagnosed back in July 2013 after we had to cut our Universal Studios (FL) vacation short due to my symptoms. My symptoms may have come about due to a hemmorhoid in the beginning (in early June), but I had never had those before either so I just thought that would clear up & go away. Well, I was about to find out that things would not go as easily as hoped!

The diarrhea became more and more disruptive until I felt so horrible after a few days on our vacation I had no choice to go to the ER back in PA. I think I freaked out my very good friend and business partner because we were supposed to see them again before we finished up our vacation. I had told him that we had to cut the trip short, and I was heading back to PA to get this looked at since I just couldn’t take the pain anymore.

I was originally given Cipro & Flagyl to control my issues, but that seemed to make things worse (there was a bathroom disaster in the middle of the night that will forever go unmentioned – thankfully there were no witnesses). Eventually they got me on a prednisone taper and Asacol HD, and shortly after taking that my symptoms seemed to completely disappear.

My first follow-up colonoscopy went very well thankfully. All my numbers looked good and I seemed to be doing great. After all, I had already been eating very healthy (with the help of my very supportive wife, who began running regularly and eating better as well), and exercising regularly. Keeping stress at bay as the CEO of 2 financial practices can be a little tricky, but I seemed to keep that in check better as well.

My second follow-up (no colonoscopy this time) went very well. My doctor said that we should schedule another colonoscopy in March, but with tax season going full-tilt I said after tax season would be best. However, due to a change in insurance cost (for meds, procedures, and deductibles being ridiculously raised) I told them I needed to schedule something at the end of April ’15 due to the insurance changes taking effect in May ’15. They could not fit me in and (obviously) I was not thrilled with that decision.

I am most concerned about the long-term side effects of Asacol HD (renal failure, etc.), as is my wife. I have completely changed my focus in life to what is most important – my health & my family’s well-being. Putting that into perspective has helped me to keep my UC under control.

Medications:

I try to limit stress as much as possible (not easy though) by exercising ~ 4X’s/wk. I am very mindful of what I put into my body (drugs, food, medications, drinks, etc.) – processed food is absolute crap for your body!

Also, I’m down to 1 Asacol HD pill/day…making sure I still take the l-glutamine first thing in the morning 1/2 hr. before breakfast; get my greek yogurt, raw honey, chia, hemp hearts, ground flax, cinnamon, raw nuts, and various berries/cherries (various seasonal fruits) and/or banana, along with kefir for breakfast; usually a loaded salad with good protein for lunch (avacado or guacamole is a must if available); and something similar for dinner.

I also limit my bread/pasta/pizza intake to once/day (if at all) – this has helped me have no UC symptoms at all since being originally diagnosed.

I usually drink V-8, lemon water, kefir, and green tea during the day and make sure to get some raw apple cider vinegar in one of my waters (or salads) during the day. Finally, I finish off my night by taking a new supplement (pill) that has turmeric root & extract, ginger root, black pepper extract, boswellia, and devil’s claw (drink it down with some kefir & water). Basically that pill now replaces one of my Asacol HD pills that I took at night.

Once I go off the Asacol HD entirely, I plan on adding a slippery elm bark supplement (in powder form probably) around lunch or shortly thereafter. Everything seems to be working just fine; still being careful about what I put into my body, esp. when it comes to food. I READ EVERY LABEL – my wife thinks I’m nuts, but she knows why I do it (for not only myself, but for my children’s health & hers as well).

I will whip this auotimmune disease – it will not whip me! Marty – 2; Colitis – 1 (first and only time)!

written by Marty Fed

submitted in the colitis venting area




asacol, l-glutamine

18 Responses to My Adventures In The Land of UC

  1. Tom
    Tom July 14, 2015 at 5:15 am #

    Marty

    Side effects from Asacol or any 5-ASA drugs are low especially when compared with steroids or immune suppressants.

    Despite all the “success” stories about diet and positive thinking you can read, UC is like you said, an autoimmune disease and needs medication to keep it in check. I never failed to take my medication and still ended up with a permanent stoma at the age of 24 so don’t take this disease lightly. I also personally know of people who have died due to UC so it would be foolish to think that it can be controlled by a healthy diet, less stress and supplements alone

  2. Marty Fed
    Marty July 14, 2015 at 11:53 am #

    Hi Tom,

    Foolish only if you don’t take care of yourself, and don’t do your homework on other options. I believe that with my diet, exercise, and supplements I can (as have many others I have talked to) control my UC.

    Since I’m down to one Asacol HD pill/day for the last few weeks, I’ve noticed no changes at all (still symptom-free).

    I’m a little dismayed at your negative tone (sorry you know people who died from UC), but I sure don’t take the disease lightly at all.

    I feel as though I am stronger/smarter than the average bear, and will continue down the path I know is right for me at this time.

  3. shelly in maine July 14, 2015 at 4:59 pm #

    Hey Marty…keep it up! 1 asacol probably isn’t making a difference, but mentally will help you wean off. All the changes you have made are awesome. Don’t be surprised if you give up more alng the way(most of us follow SCD that are doing it natural or what is best for us all in the long run. Food, as we know it today, is not our parents’ or grandparents’ food with lots of chemicals and additives, etc. I ended up first going gluten free(and the store stuff is crap), then gave up dairy and then to SCD…(Breaking the Vicious Cycle by Elaine Gottschall). Adam has lots in his book/cookbook and many on this site about it.
    Anyway, Tom, like many of us have struggled for many years and some not for many, that UC is a rollercoaster and what I also call the Grim Reaper that is always lurking despite some of our best efforts. (My story/stories are on here..I’m a lifer and have been Med free for almost 4 years, but know it may not last as i have had several flares and iritis since.
    So anyway, stay positive and keep fighting, but also realize a flare may occur and you can get through it probably with more changes. And tell your wife and family members you are a wee bit crazy and OCD when it comes to your food..it is a matter of life and health. I always told my family that they may get sick for a day or 2, but we could end up being sick for months!
    Best and good health, Shelly

  4. Bev July 15, 2015 at 7:32 am #

    I’ll chime in here.

    I have been med free for six years, only taking a good probiotic and L-glutamine.

    I believe that you CAN manage UC without medication. I am always keenly aware that I have this for life, and that it could recur, but I also believe that I can manage it myself by taking care of myself and being careful as to what I put into my body. I never take advil or any ibuprofens, andI never drink alcohol. Two things that I used to do occasionally six years ago, and I believe, things that made my gastro bleed and that perhaps kept me flaring.

    All the doctors and all the meds that I took over the first 15 years of my dance with UC only served to make things worse.

    I also do not believe that colon removal is inevitable any more. I used to think that it would always be the end result. I am positive that not everyone with UC will or has to lose their colons.

    Keep on doing what you are doing. It can be done!!

    BTW, GREAT post Shelly. You are a diamond!!

    • shelly in maine July 15, 2015 at 9:17 am #

      Right back at ya Bev! :-)

    • shelly in maine July 15, 2015 at 9:40 am #

      Bev, (and all) I used a new product from my chiro. this last very bad flare, 15-20 x trips to bathroom complete with blood loss, basic anemia, joint pain, etc and round #3 of iritis….sick all winter and spring after getting sick from kids at school…my usual! Anyway it is called Intestinal Restore by Desbio…I think you can buy it direct…I will write a new post/story soon. I tried the lglutamine again and couldn’t get the dosing right I guess…this had lglut and some the amino acids, etc. AWESOME!

      • Bev July 15, 2015 at 10:29 am #

        I am so interested in this!! I want to hear the story.

        Intestinal restore…the name sort of says it all, doesn’t it Shelly?

        AND…it sounds like it is actually GOOD for the body, unlike the medications…just sayin’!

      • Adam
        Adam July 15, 2015 at 12:50 pm #

        Come on Shelly!!! let’s see the post:)))) This sounds like something nobody has mentioned before on the site:) —Adam

        • Bev July 15, 2015 at 1:08 pm #

          She is teasing us:):):)

        • shelly in maine July 15, 2015 at 4:11 pm #

          I will write it up soon(hopefully tomorrow when I have fresher brain!)…pretty amazing. Can’t wait to share…had to make sure before I wrote/endorsed it. And I didn’t want to jinx it either!! :-)

          • Bev July 15, 2015 at 4:35 pm #

            Can’t wait either…:)

        • Joanne July 16, 2015 at 2:21 am #

          Adam i did not find a direct email for you so I thought I would try this. I was asked by a GI doctor if I would be willing to speak to a group of GI docs to tell them what it is like to live with uc . the human being. Not just being a patient. I have 10minutes for this presentation. A friend is avideographor..by profession. So today we decided to. Video tape and started to write our story board from my hospital bed where I have been for15 days due to horrible flare brought on by pneumonia and cmv. So what I would like from my fellow uc. Folks is this. Give Me one sentence about .w,hat you would like the doctors to know about living with uc.one of my pieces is. Pooping on the side of the road 101. Yeah we are going to film that. Wouldbyou be willing to get this to uc folks? Just a sentence. Or two that they may want to convey to the doctors to let them know how we live with is day to day. I want to give everyone in the audience a depends to pull on and ask them to wear it during the presentation! Anyway it is the middle of the night in the hospital and I better try to sleep before the sneaker brigade shows up…..you know,,,,all the students,interns,residents,fellows and their attending doctor.I see their feet under the hospital curtain as they file in and the ominous music from Jaws pops into my head.

          • Joyce C
            Joyce July 16, 2015 at 5:36 am #

            I once read a comment by someone (possibly on these boards) and it really stuck with me:
            “I tell people that being in a long UC flare is akin to sitting on the sidelines….just patiently waiting to get back in the game of life.”
            Oh, so true….

      • Marty Fed
        Marty July 15, 2015 at 1:33 pm #

        Yes, please do share more on this Shelly!

  5. Marty Fed
    Marty July 15, 2015 at 7:50 am #

    Thanks Bev & Shelly – positivity is what’s best (along with due diligence)!

    • Bev July 15, 2015 at 7:57 am #

      Anytime, Marty. We are all in this thing so we might as well do our best!!

    • shelly in maine July 15, 2015 at 9:25 am #

      You bet, Marty…positive focus forward! And like Bev said and I mentioned, as you go along you will probably give up more “no” foods and meds, etc.
      Kyle is a recent convert to SCD and is having success so you may want to give his recent update a read…search SCD is doing it for me…Kyle and he added a bunch of very helpful links.

  6. cae July 17, 2015 at 12:27 am #

    my son has uc [ pandolitis in 2013 ] amidst a lot of stress. I am a nurse and study all my patients with UC in great detail. it is obvious to me in all cases that I see [ my son included ] that a positive attitude ` the people who just get on with it , yeah hard when the symptoms are so awful , I know , that these do so much better than others who let it take them over. . my lad worked all thru constant diarrhoea / bleeding / weakness etc, he is good at the moment , but of course anything could happen at any time . he had a crap diet when it started and drank energy drinks . I think they contributed.

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