Ulcerative Colitis Tips


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Dying to Find Out…

Meet Roberto:

My name is Roberto Lopez, I’m 23 years old. My hobbies are computer games, fixing computers, and paintball. I currently live in San Diego to work and my family is in Mexicali.

My Symptoms:

Some little blood and mucus once in a while.

My Story:

Sorry for making it a bit long.
I was living in Mexico when the really bad symptoms happened. I went to the cheap doctors since going to good doctors was out of the question at my economic level.  I described my symptoms and was given cheap medicine for infection and it seemed like he ignored the bloody diarrhea. After a week of still having the same really bad symptoms with very bad pain I went again to the same doctor, this time I was sent to get some blood tests and came back with anemia. Again seeing as he ignored the bloody diarrhea I came to San Diego, worked for 2 weeks and with what I earned returned home to see a better doctor. This other doctor sent me for more blood tests and came back with even worse anemia than before and was told I would need blood transfusion and needed to be taken to the hospital.

By now my mother was terrified and to make things worse the doctor says, “It’s incredible he has the strength to be up, with the levels(hemoglobin) that low he could get a heart attack. So we leave the doctor and plan to go to the hospital, but in Mexico to get a blood transfusion they require that you look for the blood yourself and to replace that blood by taking a donor. So after some discussion we decide it’s best to make the 3 hour drive to San Diego, where I would be better taken care of, and worry about how to pay later.

san diego blood transfusions

When we finally arrived at the hospital they immediately have me the blood transfusion, and when I described my symptoms they scheduled a colonoscopy.

And that’s how I found out that I have UC.

What worries me most and my biggest question is:

How likely is it that my Colitis will lead to surgery?

I’ve been on Sulfasalazine since I was diagnosed in March, 2012. 500 MG tablets, 3 tablets twice a day. I have been feeling fine and only occasionally see a little blood and/or mucus. I poop once every other day which I wasn’t sure if it was good or bad, but after reading about people going 4-10 times a day I guess it’s good thing.

Thank you those of you that took the time to read my story. Any tips are greatly appreciated as I am new to this and still have a lot to learn and research.

written by Roberto

submitted in the colitis venting area




blood transfusions, Mexico

6 Responses to Dying to Find Out…

  1. KK-SCDer August 3, 2012 at 12:00 pm #

    Hi Roberto,

    I’m sorry to hear that you were diagnosed with UC. I’m also 23 and living with UC, although I was diagnosed when I was 16. I hate to be morbid about it, and I don’t have any statistics to back this up, but I think most people who stick to conventional treatments (e.g. asacol, lialda, 6MP, pred, etc.) end up getting surgery. The main reason is that none of these medications actually works. Yes, a lot of people feel better for a while, years maybe, but then your colon decides it’s a good time to stop working. When I was first diagnosed with the UC, I was not doing too bad. I didn’t have anemia problems, and was going about once a day. But over the last 7 years things have gotten progressively worse and I’m starting to look at surgery as an option. I’m pinning all of my hopes on the SCD diet. If that doesn’t work then I may go for surgery, because this condition is making it impossible to live a normal life. Nevertheless, if you are strong willed enough to keep fighting and keep looking for ways to feel better, beyond the usual medication, you may be able to get better without surgery.
    Good luck! I wish you the best!

  2. uma August 3, 2012 at 6:43 pm #

    Hi Roberto, Not all people require surgery. The goal must be to remain in remission as long as possible by managing your diet and doing what works for you. If sulfasalazine works for you, thats good. Has the blood and mucus stopped. Then you must try to maintain this. No alcohol at all. Take a good probiotic too. Good luck.

  3. Adam
    Adam August 3, 2012 at 10:47 pm #

    Hey Roberto,

    Thanks so much for sharing your story. I’m a little bit bummed out to hear that the medical world down south of the border in Mexico doesn’t seem to be as great as you’d probably like, but I’m way happy you were able to take advantage of the medical world in San Diego. Even more reason for the world to come up with a simple worldwide cure/treatment that is easy and accessible to everyone. Gonna take some time though.

    I did some research earlier tonight with regards to your question about surgery and the question everyone asks “What are the chances I’ll need my colon removed…?” I for sure have wondered that several times in the past.

    So, after searching through some publications on PUBMED, I came across this clip. It’s from a study completed in July of 2011 and here’s one answer:

    “In a recent population-based European study, the global risk of colectomy in UC was 8.7% over 10 years.”

    The whole story is FREE and available for anybody to read here at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3158396/?tool=pubmed

    the title of work linked above is: “Current treatment of ulcerative colitis” and I think it would do you some good to give it a read through.

    Best of luck to you Roberto, and thanks again for sharing your story.

    -Adam

  4. Steve August 4, 2012 at 5:00 am #

    Hi Roberto…I feel you on the, “Given these blood tests, I can’t believe you are out of bed” thing. I had a doctor who ordered a second set of blood test just to make sure there was no mistake. The girl who came to take it again apologized profusely so I must have been pretty bad off, though, I felt fine. I went for something entirely unrelated.

    As everyone above said, surgery is actually quite rare in the scheme of things. When I was told what I had, the first thing I thought about was, “will I have to get surgery?” I later found out that it all depends on how you are doing. Some people progressively get worse even with treatment. Others can enter remission and not be sick for years. Given my experiences with the medicine you are on, I say you are luckier than me. It made me worse.

    Anyway welcome and thanks for sharing your story!

  5. Bev August 4, 2012 at 7:57 am #

    Hi Roberto!

    Ditto on what Uma said. Incorporate a good probiotic (50 billion strong) and try that SCD diet. I think, like KK-SCDer said, that the meds eventuaklly do stop working. But all is not lost! That’s when we have to try and heal ourselves. I think, at that time, it’s either try and heal yourself…or surgery. I do not believe that surgery is inevitable! No way!

    I got off all the medications (because they stopped working for me), I took a good probiotic for two months before I stopped the meds, and then also added L-glutamine and astaxanthin (a natural anti inflammatory). I have NO symptoms at all anymore. It is going on 7 months now! No medical drugs anymore! These three things only cost me about $50 per month. I also eat alot of fruit, like bananas and blueberries.

    It cannot hurt you to try these things, before you get off the medication. Don’t stop your medication until you are feeling so good that you can!!

    Cheers:)

  6. Roberto
    Roberto August 4, 2012 at 9:20 pm #

    Thank you all for your responses. Adam, thank you for the article. I will read that and continue researching this. I have never been one to give up and I don’t plan on starting anytime soon.

    So what I get from the tips is do what works, if it stops working try something else. Sounds simple enough. I made an appointment to go to the doctor this week and I will ask about the medications and treatments to get a better idea of what’s to come.

    Thank you all for your support.

    -Roberto

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