Hopeful but Lost

"I have had digestive issues since I could remember"

“I have had digestive issues since I could remember”

I started having bloody bowel movements followed by cramping in January 2014. It lasted for longer than 2 weeks. When I saw my doctor, she scheduled me for a sigmoidoscopy. During my procedure, the doctor saw inflammation and proceeded to do a full colonoscopy. About a week into early February, my doctor called me and said “I think you have UC.” She called in a Rx for Balsalazide and sent me on my way. The medicine did not work. It made things worse. I have extreme headaches and I stopped taking it myself. At the next doctor’s appointment, I was told there’s nothing I can do to cure it and I would just have to continue taking the medicine. Early March-New Doctor (Rx for Lialda) worked for 1.5 mths. Still currently bleeding. I want to find a cure.

Some more about me:

Hello, I work in non-profit. I am working on getting my Master’s degree in Pubic Health. I work and live in San Francisco. I love music. I LOVE food. I enjoy working out and doing pilates. I do like to travel and now I just have to be well prepared when traveling!!

Symptoms:

I have the urge to go especially in the mornings. I have bloody bowel movements. I also have LOTS of gas and bloating. During my first “flare” in Jaunary/early February, it lasted about 3-4 weeks.

Hopeful but Lost

I have had digestive issues since I could remember. I cut out dairy and acidic and hot spicy foods a long time ago. When I started feeling my flare, I quit drinking alcohol. I’ve had at least 3 glasses of wine in the past 6 months. I am definitely a huge foodie. I don’t want to label myself as GF,Vegan, Paleo, etc. I just want to eat what I can eat.

I learned that I have an Almond intolerance through a test. So I cut those out :( That was the hardest challenge.

After my “unofficial” diagnosis, I decided to watch my food intake even more. Nothing seems to make a huge difference.

What I take/do to help ease symptoms:
-Drink herb tea (mix of chamomile and mint) 2x/day
-Lialda (4pills 1/x/day)
-Vitamin D3 (once a day)
-L-Glutamine (once d day)
-Ultimate Flora, Critical Colon 80 billin (once a day)

I am starting a 7 day program of Ultimate Flora Probiotics this week.
Still taking Lialda, still bleeding.

Doctors have not been supportive. Basic answer: UC is not curable. I’m so sick of it.

My last GI doctor said he was leaving Kaiser 2 days before his last day. My diagnosis was unresolved when he left. After some tests, the results found no inflammation but he left before I could follow up. Now I have no GI doctor until late August.

I really want to find a specialist but one who believes there is a cure or that I can be in “remission” without having to take meds that don’t technically work. I am open to natural remedies. I have researched tons of them but I want to work with a doctor who knows. My mom is the only person helping me. She is extremely knowledgeable regarding testing and linking correlations between toxins and other symptoms. My friends and family just think I have diarrhea/stomachaches.

Ask Adam:

Do you think food is the biggest culprit of UC? Do people with UC believe that environmental toxins cause it?

written by Rina

submitted in the colitis venting area





8 Responses to “Hopeful but Lost”

  1. AdamJuly 21, 2014 at 1:00 am #

    Rina,

    I think that food is a major contributor to symptoms for alot of people. Not for everyone though. If everyone was able to digest all sorts of foods completely without gut bacteria being invovled in the digestive equation, then I think UC symptoms would be quite a bit less if not completely.

    But besides food, I also most definitely think that stress can be a major trigger to the immune system, and one that gets much less attention that we should be giving it. If you look at the results of the stress surveys we’ve conducted on the site, it seems quite clear that it very well may play a part in colitis symptoms being activated (or re-activated)… here’s a link to that: http://www.ihaveuc.com/colitis-and-stress-151-patient-survey-results-part-1/

    Good luck in your search for someone to help you who’s also on the same thought pattern as you. You might want to give a read to Brent’s story. I met with him back in San Francisco when I was living there and he too has UC and is into the non-western thinking/possibilities.

    (AND…. there’s an herb/health store on Valencia street near Cesar Chavez in SF. Anyways, a young girl works there with brown hair, forgotten her name, but her Dad has UC and he’s treating it holistically… You may want to go there and ask for her about what his trick is. It may work for you too. her thinking is based on acidic levels in the gut: http://scarletsageherb.com/ that’s the stores site. best to you,

    Adam

    • Rina
      RinaJuly 21, 2014 at 9:23 am #

      Hi Adam,

      Thanks for posting my story! I started to take some stress reduction classes to reduce stress as best as I can. I am such a worrier so I know that my stress definitely comes into play with triggering my symptoms.

      I love Scarlet Sage! I bought a few supplements from there before but there are so many like slippery elm, etc, that people credit to having worked for them. I’d like to be under a doctor’s care who does believe in finding a cure. I am searching for a functional medicine doctor. However, they are $$$$ so we will see.

      I’ll go ahead and read Brent’s story too.

      Thanks again!!

      • AdamJuly 22, 2014 at 5:46 am #

        Good luck Rina, and for sure keep us posted on how things go:)

  2. MiguelJuly 21, 2014 at 6:33 am #

    Dr Thomas Cowan, fourfold healing his is out of San fransisco and does phone consultations. He is MD but focuses on holistic treatment. He is expensive but worth it!

    • Rina
      RinaJuly 21, 2014 at 9:20 am #

      Hi Miguel,

      Thank you so much. I will look him up tonight!

  3. MiguelJuly 21, 2014 at 6:33 am #

    Dr Thomas Cowan, fourfold healing his is out of San fransisco and does phone consultations. He is MD but focuses on holistic treatment. He is expensive but worth it!

  4. PauletteJuly 21, 2014 at 12:43 pm #

    Hi Rina
    I see your picture of a lovely young girl and it breaks my heart for you young ones to be sattled with this rediculous chronic disease!
    I was diagnosed when I was 60 years old in 2010. It’s so unfair that you younger ones have to even worry about this in your youth.
    That being said, you have a chronic condition that may not find a cure in your lifetime.
    Researchers are working like crazy on this, trying to find out why our colons are being attached from within.
    I know you want this to go away so you can enjoy your life. It’s what we all want.
    However there will be no GI that will tell you he or she has the “magic wand” for a cure at present.If you find a doctor who does, he is most likely a quack!
    That’s why we who share this THING, are busy trying to keep ourselves in REMISSION with food choices, meds, lifestyle. There is no alternative other than sitting on the toilet 24/7.
    I was in a 3 year remission and I thought I beat the odds. I had gone back to eating whatever I wanted, and I was feeling pretty cocky! Then BAM!! Car got stolen from right underneath me at a gas station in Jan of this year, was so stressed out, and I was in a bad flare until about a month ago.
    My eating choices are now STRICT and I follow the SCD diet. I try to eliminate stress the best I know how to, but now I am not so cocky, and I totally get that this bad boogie man can surface again.
    My best advise to you would be to ACCEPT this as CHRONIC with no present cure. Read, try different choices whether holistic or meds, really watch what you eat. Lots of yummy things out there for us written specifically for our condition.
    I know this is frustrating hon , but MANAGE this thing trying options. Some will work, others not, because we are all unique and our bodies respond differently to the many choices out there for our disease!
    I will add something that helps me. I had a Chinese GI who told me mint tea only to calm the stomach. It actually really works for me?
    Take a deep breath, and move forward.
    All my best Rina, Paulette

  5. Majeed AldamahJuly 21, 2014 at 7:10 pm #

    Hi every one have UC
    You can try new remedy called fecal transplantation ( not proved by FDA) by
    using feace of helthy person (not smok not drink alchohol not eat processed food
    and slim) .Do it by your self using enema many times . you find information at power of poop site. Good luck

Leave a Reply