My Story and I’m Sticking to It

I'm Adrian!

I’m Adrian!

Meet Adrian:

40 Diagnosed May 2013. I started having symptoms in January 2013 but was kind of embarrassed so I didn’t go see a doctor until March. Had a colonoscopy in May 2013 and had a sigmoidoscopy in March 2014.

Some more about me:

I live in Seattle WA and work in the financial industry. I am an active guy (softball, gym, jogging, tennis, etc.) and like to travel. We try to go somewhere tropical every year.

Symptoms:

Currently have bloody, watery, mucus diarrhea. Mild cramping. Fatigue due to getting up to go to the bathroom roughly every hour at night and (I assume) the loss of blood. My back and ribs ached too.

My Story and I’m Sticking to It

Well after doing a lot of research I realized that I probably had UC symptoms that started in 2006 or so. It started with chronic canker sores, some sever. I stared seeing blood in my stool in January 2013 and of course didn’t go see a doctor until March. The blood volume was lite and stool was firm until the middle to end of February.

I first went to the local family practitioner. Long story short she misdiagnosed me with internal hemorrhoids and constipation. She prescribed a fiber supplement (not good for UC) and a suppository. She also recommended I see a surgeon to have the internal hemorrhoids removed. Being a good patient I gave the fiber a chance, not knowing this was not going to work and probably made my symptoms worse. After two months and no progress I made an appointment with the surgeon (5/17/13). He checked me out and said “there was nothing he could do” and that “I should see a gastroenterologist”, he recommended one to me. I made an appoint for 5/23/14, just before a trip to Las Vegas for Memorial Day weekend. By Monday the 20th I was very sick. I had lost about 16lbs in 10 days, was not eating, was extremely tired, major cramping, and, of course, going to the bathroom non-stop. The next day I called the Gastro office and asked if I could get any sooner because I couldn’t wait until Thursday. They got me in that day and after the Dr. looked me over he scheduled a colonoscopy for the next day. Went through the colonoscopy and was diagnosed with UC. He put me on Ciprofloxacin and Metronidazole (both antibiotics) for and infection, and Mesalamine (Lialda) and Prednisone to help with the colitis. He also put me on Azathioprine a little while later. Within a week I was symptom free. My skin was even really clear. I thought the Dr. was a miracle worker. I was off the antibiotics once they ran out and the Dr. slowly started taking me off the Prednisone after a month or so. I am still on the Lialda and Azathioprine.

I was in remission until this January (2014) when I started seeing blood again. I made an appointment once the diarrhea started (March). The Dr. put me on Budesonide (Uceris). I was on that until the middle of May; it had no effect on my symptoms. The Dr. put me back on Prednisone and submitted a request to my insurance company for Simponi. The Simponi was declined; they want me to try Humira first. That Rx is being processed and I’m hoping to start that next week. I was given a TB test, pneumonia immunization, and started the Hep B vaccination.

So far I like my Gastro doctor. I do feel like I should see a second doctor just to get a second opinion. It seems like the only solution is to keep lowering my immune system.

It may be the Lialda and/or the Azathioprine but I haven’t had that bad of cramping.

My biggest issue

is with the urgent need

to go to the bathroom.

It’s hard to see a show or play softball if, at any moment, all of a sudden I need to go to the bathroom, like within 30 seconds or I’ll have an accident. Also the fact that I can’t fart without feeling like I’m going to crap my pants. Ugh.

My biggest fear is colon cancer and/or needing to have my colon removed.

Ask Adam:

I’m still looking around the site. My biggest question would be around Humira and I see there’s already some information about it so I’m going to read up on that.

written by Adrian S

submitted in the colitis venting area

adam from ihaveucAdrian,

Yeah, there’s quite a few different links with regards to humira on the site.  Here’s a few I think you might find interesting:

Thanks so much for sharing Adrian, and although your doctors probably haven’t made any mention yet, I for sure wouldn’t count out something like the SCD diet which is what I use to treat my UC and its worked great.

Take care,

Adam

PS:  One more thing, you “try to go somewhere tropical every year.”…Well, that’s some great news.  When you are down in the tropics next make sure to bring along a hammer and screw driver and a few plastic straws.  Find some coconuts and drink the water.  I for sure there’s not much better in terms of liquids than what comes out of those cocos.  Maybe try drinking a full coconut on day 1 and then go from there.




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4 Responses to My Story and I’m Sticking to It

  1. Mary S
    Mary July 8, 2014 at 9:21 am #

    Hi Adrian, welcome aboard. You’ll find a lot of good info here. My uc is not as severe as yours but I too have a problem with urgency when I’m in a flare and have maybe 30 seconds to find a bathroom. I’m retired so I stay home on those days but I feel bad for those who have to work. As you look through the site you’ll find lots of self help ideas like probiotics and other supplements , olive oil, diet etc. Regardless of what your doctor may say do not underestimate the power of diet, whether you go SCD, gluten free or just eliminating foods that aggravate you. My dr recommends metamucil and I take it everyday. It helps the diarrhea by bulking things up. What works for one person may not work for the next. One thing I would suggest is that you not wait until your flare is severe before seeing your doc. Early treatment may help head off a major flare. Good luck!

  2. Katherine July 8, 2014 at 10:43 am #

    Am I missing something with the coconut water? Island castaways (and Bear Grylls, famous survival expert in the UK) say its a laxative. #confused

    • Adam
      Adam July 8, 2014 at 1:27 pm #

      Hey Katherine,

      Very well may be a laxative for some, but I was not seeing any of that for several months where I was putting down several cocos (some larger than others with 1/4 gallon of water inside:) per day and staying at the 1 poop/day average with nice hardness. Maybe some others with coco water experience can offer some ideas. I also don’t remember any of the local bahamians mentioning anything about the water being a laxative, but heck, all is possible. (Maybe I should have added that I was also the UC’er who was falling into the small percentage of people who the medications ((humira, remicade, asacol, coloazal, sulfasalazine and enemas…) did not work..:)) Mr. Bear…love watching that guy on tv

      • Katherine July 8, 2014 at 9:06 pm #

        Maybe it’s only a laxative if you drink nothing but coconut water on a diet of nothing but a few jungle bugs :) Or maybe I shouldn’t believe everything I hear on TV *shock* :)

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