It Was Never UC

Introduction:

Paula – mother of a 14 year old diagnosed with UC on July 5, 2012.
No therapy worked for him…. yet Dr.s failed to test further. Had high, spiking fever for months and all they could say was ulcerative colitis. AMOEBAS AND TYPHOID FEVER IS NOT UC!

It Was Never UC

My 14 year old son was diagnosed with UC on July 5th , 2012. For months and months I was told he had UC. Nothing worked – Prednisone, Remicade, Methrotrexate!! 3 C-diff infections! For over 3 months he had high fevers of 102.7 to 104.00 – was admitted over 6 times due to fever just to be sent home with fever and them always saying it was UC!!

Dec. 29, 2012 I finally took him to Algodones Mexico and they ran stool test and blood. Within 3 hours he was diagnosed with severe amoebiasis and typhoid fever. Got treated with meds and fever finally went away and so did amoebas. Bleeding and diarrhea finally stopped after 7 moths. Dr. in Mexico said he was lucky to be alive since the typhoid had gone untreated for so long. He needed a blood transfusion due to low HB and came back to LA to get it done. His GI brushed off the typhoid and said amoebas were very common yet he had never ever in 7 months and after 6 colonoscopies tested him for it.

Vomiting of bile that had gone on for over 3 months was answered as being psychological. Scheduled his blood transfusion and they overfilled him with IV fluids, his heart was weak due to the length of typhoid being untreated. They put IV fluids on both of his arms!!! My son died within a day of being admitted for a blood transfusion!!!

HE NEVER HAD UC as an autoimmune disease….he had amoebiasis and salmonelosis!! I THINK THERE ARE MANY MORE GOING THROUGH THE SAME THING.. THOUSANDS!!! He was a day short of his 15th birthday, passed away Feb. 12, 2013. Their answer was they don’t check for amoebas in this country since we are sooo advanced and industrialized. My son never, ever had gone out of the country. THIS COUNTRY IS SOOOO BEHIND WHEN IT COMES TO ISSUES OF THE GUT. The first thing they check for everywhere else is amoebas or typhoid fever….they killed my son!!! Get second, third, fourth, and fifth opinions! Go out of the country to run your labs and blood tests!! He was a superior athlete – soccer players and track runner!!

written by “Devastated Mother”

submitted in the friends and family of UC patients venting area




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amoebiasis, salmonelosis

21 Responses to It Was Never UC

  1. Maggie March 10, 2013 at 3:48 pm #

    Paula, I’m so sorry for your shocking loss. I’ve never heard of an amoeba infection but I will check it out. I have heard of typoid fever. It was your terrible luck to have found such a horrible GI. I hope nobody else has to go through this, thank you for sharing and hopefully you’ve saved a life.

  2. Heidi March 10, 2013 at 6:07 pm #

    Paula,

    I’m so sorry for the senseless death of your son. I feel angry and frustrated reading what you and he went through.

    I’m so grateful that you took the time to share this story here because it can help open the eyes of many of us who have been diagnosed with this disease and motivate us to really understand and take control of our own health.

    Thank you, and I will pray that you will have the strength to overcome this tragedy

  3. PAULA March 10, 2013 at 6:36 pm #

    The GI told me that amoebas are very common but yet he never tested him for it and made teh comment only after they had already diagnosed him in Mexico. He said that since this is an industrialized country they never check for it here!!!!! For over 7 months they super – double confirmed him with PANCOLITIS! and when nothing worked on him they just said he was part of the percentage that standard treatment failed. They never even found the typhoid fever… in the US they do not look for the antibodies and in Mexico they found it within hours! I just went over there too late. Treatment in the US is completely different than in other countries. We think we are so advanced and we are so far away from that. We think that FECAL TRANSPLANT is a last option but it should have been my first to invade his colon with good bacteria and kill off the bad. My son will never be with us again. It’s unbelievable that it was due to untreated amoebas and typhoid fever which they never, ever tested him for. He was treated at Kaiser Permanente in Hollywood, CA.

    • kara March 11, 2013 at 12:37 am #

      Paula,

      I just found these parts of your story. How shocking and terrible!! I am so sorry that you had to experience this!!!

      The doctor has also told us that Maddi’s vomiting was probably pschological before too. I know that it only happens during a flare and they treated it with zofran and phenegrin in extreme cases, but usually only zofran. these options help with symptoms but never address the source. Maddi has never had the fevers, thankfully, but what are Ameobas?

      Kara

  4. shelly March 10, 2013 at 7:48 pm #

    Paula, I am so terribly sorry for the loss of your son. I can not imagine your pain and anger and I hope these Drs who as a whole so callously treat us and our loved ones one day come to understand what they have done. It makes me livid beyond words.

  5. shelly March 10, 2013 at 7:50 pm #

    Bev, sorry but I think it’s a little callous to leave a comment with a smiley face in response to a woman posting about the loss of her child. Don’t mean to be rude, just thought it was totally inappropriate.

    • bev March 10, 2013 at 10:03 pm #

      Uh…actually, I didn’t read the full post until after I’d left the comment. I am truly sorry…

      I don’t think you needed to tell me, tho, Shelly. It’s not your post. Don’t take it so personally to yourself. I don’t need scolding or admonishment…I felt bad enough before…I think that you know that I am far from callous…

      I already knew I’d misspoken afterwards because I had not read to the end that her son had tragically passed away, because I was so pissed at the misdiagnosis by his doctors, and I was actually going to leave a follow up comment, but I thought I’d leave it alone.

      BUT…thanks ALOT for pointing it all out again…

      Bev

      • shelly March 11, 2013 at 4:24 pm #

        Sorry Bev, the point was not to embarrass or admonish. You’re right, that’s not my job. But, as a parent who has a child who struggles with this nightmare, I assure you there’s little that’s more difficult and Paula’s post left me in absolute tears. Perhaps I found it a little more shocking because of my circumstance as opposed to yours. As for my right to comment – you put something out there and I responded. I appreciate it was a mistake but if I had seen that in response to a post on this site I think I’d have been sick to my stomach. Just as it’s not about me it’s not about you either. Enough said on this topic.

        • bev March 11, 2013 at 4:47 pm #

          Please Shelly…let it go. I had my comment removed already because I am sorry.

          Have you never hit ‘submit comment’ too quickly and couldn’t take it back?

          Please…you’re making me not really want to be on the site any more at this point…

  6. kara March 11, 2013 at 12:45 am #

    Paula,

    I just read up on Amoebiasis- wow! We insisted on testing a stool sample for parasites with our pediatrician at initial diagnosis. She laughed at us, but complied with our request. But how do we know if it was a thorough tests? we have had a stool culture done twice since then at a University hospital. Do you think it would have been found in these 3 tests or is there another test that I should order that is more comprehensive?

    Kara

    • Ellen March 11, 2013 at 7:19 am #

      Kara, ask your doctor to do the blood test also for Amoeba Antibody. If it shows that you are positive to the antibody which means you have been infected with Amoeba Dycentry now or in the past which can reoccr if you have been asymptomatic. I know there are two types of Amoeba infections, one which is harmless and the one that causes lots of problems, mimics UC symptoms but it is actually caused by parasite. The lab also has to be equippped with the proper culture. University hospitals are good but they have to know what they are doing. I forgot the protocols but your stool has to be warm or something for them to be able to detect the parasite existance or they cannot detect it… If you do the search Amoebiasis you could probably find lots of info. including how to detect them and such.

    • PAULA March 12, 2013 at 1:01 am #

      My son Austin had over 20 stool tests and they never found the amoebas. He did have 3 episodes of c-diff and tehy catched those but never the root of the problem. Like another post says, the amoebas are hard to detect and her you drop the stool at the lab, they refrigerate it, sometimes even freeze it, transport it to the main lab and by that time any amoebas that may have been there are complety gone. In Mexico they look for the amoeba eggs – that’s the way they test for in most other countries around the world. They also test the stool almost immediately after you turn it in, which is completely fresh and even warm. The fact that so much incompetence exists in a medical system where I fully and blindly trusted my son’s with gives me nausea and makes me cry.

      My son had no fever for months. It was 5 months later that he started spiking the fevers.

      • Ellen March 12, 2013 at 8:22 am #

        Hi Paula:
        Doctors in developed countries are not trained to look for amoeba, collera, or any other infectious/parasite intestinal condition. I asked another doctor who specializes in UC (he is MD but specializes in chinese medicine for UC patients), and he has admitted to me today that because in developed world, those medical professionals have no clinical experience with common diseases that may occur in developing contries, they just dont know how to do the differential diagnosis with UC or other parasitic medical conditions.
        As a result there are quite a few people who had gone misdiagnosed for 8 yrs or more (one guy in UK he had amoebiasis for 25 yrs being treated with UC medications…), and when they were given steroid they almost died.

        Most people including those doctors dont know this and they should actually. I only know this because I have traveled to India and Hong Kong for business, and to Bali (Indonasia) for vacation. I got infected with Amoebiasis while in India (was hospitalized there) and after UC diagnosis I am not so sure if this is UC now after going through hospitalization through 2 hospitals…I had to explicitly tell one of the doc. that they need to look for it specifically and through the blood test finally I was positive but they dont know how to assess further to see if I had UC or Amoebiasis (and even a young doc in the first hospital almost laughed at me when I told the possibility…)

        I think to clarify any infectious or parasitic intestinal conditions, we have to visit a large hospital where an infectious disease department exists so at least they can run proper tests, unforunately. I found out even the famous university hospital just is not equipped to take care of this sort of tests (they basicaly have no exprience or have not seen these in the past in the developed countries.) Even for myself now because I traveled so much I am visiting a hospital recommended by customs and immigration (I think even CDC can also recommend a hospital if anyone wanted to get themself checked out.)

  7. Ellen March 11, 2013 at 2:01 am #

    I am sorry to see a mistake of those doctors causing this much misfortne.
    There are cases in the past I read, in case of UK, US, and Japan, where people are mistaken for Amoebiasis (infection from amoeba residing in the intestines causing ulcers) with UC and is curable with antibiotics and not with UC medications. There are men/women/children in those contries I read numerous articles Dr finding another Drs mistake of infection, because the symptoms are very very similar and hard to culture in a lab, doctors actually need to rule out infectious, known pathogens and virus to diagnose the patient with UC… A person with amoebiasis could actually get perforated colon if they are treated with steroid.
    In Japan actually they have to rule out infectious materials, but I saw some cases of misdiagnosis because amoeba is very hard to culture from stool, they recommend 3 times of stool sampling instead of just one, and there are still likelyhood that the labs cannot find amoeba existance. The best way to find amoeba althogh its not recommned is via biopsy of colonoscopy. I also understand its a form of STD its not true when doctors saying we never get this in a developed world, althogh people who travel to other tropical countries with no good water system can get the amoeba dycentry the severe form of amoeba infection that mimics that symptom of UC, which can reoccur.

  8. TiiniTete
    Tiinity March 11, 2013 at 6:37 am #

    I am so sorry for your lost! I am sure you will for the rest of your life wish that he would be around. Surely to let others hear your story is important and his death will “have a meaning”, which might not be of much help to you.

    We should never fully trust one doctor, specially not today when medicine is driven in such a large way by pharmaceutical industry. Done it for 8 years, but no more. Today I try to ask many experts, mostly who I find online, here in Sweden we don’t have that many alternatives to the common style.

  9. bev March 11, 2013 at 7:05 am #

    Adam…if you are reading this, could you possibly remove my first post on this thread, with the ‘happy face’ in it? It was inappropriate and insensitive…I should have read Paula’s entire post before I started writing mine…I was mortified when I read the rest of her post after I’d already posted mine!

    And, Paula…I am so sorry…my deepest sympathy for your loss. I have a son and I cannot even go there…

    Bev

    • PAULA March 12, 2013 at 12:54 am #

      I have a sorrow beyond description than to worry anout a smily face. I did notice it but knowing that everyone on this site suffers or knows someone that suffers from UC, i didn’t think it was ill minded. I did ask myself for a 10th of a second why a smily face but it didn’t really bother me at all. Thanks Shelly for pointing it out but it was not a big deal. Thanks Bev for requesting to have it removed but there was really no need.

      I replay in my mind the 8 months of struggle that my 14 year old son lived. I can’t erase the look on his face asking me, “when will this stop mom?” Today was a terribly hard day as 4 weeks ago was the last night I spent with him. He passed away the morning of Feb. 12th at 6:57am. Please say a prayer for him – AUSTIN ORTEGA, 14 years old (1 day short from his 15th bday).

      • bev March 12, 2013 at 7:04 am #

        You are a lovely person, PAULA.

        As I said, I cannot imagine for one minute losing my son.

        I cry for you…

  10. Marguerite Vulfs March 11, 2013 at 11:49 pm #

    Dearest Paula,

    I am sorry for the loss of your son due to something so inept. I think all of us who are parents are at a loss when the medical community fails us in such a profound way. Your son was betrayed by the medical community. I am sure already his story has brought new information to someone else and perhaps in that there could be some solace. But it does not take away your profound loss. I will think good thoughts for you in your grief.

    For the other families, your children know it is not in their heads. It is in their gut. They know. At age 15, my daughter too was told her symptoms were perhaps “in her Head” She cried to me that it was not in her head. She knew! Thank God we found an internist/acupuncturist who tested her for Candida. One month later she was reading again. From her surgery at age 11, she had developed Candida. Medication and diet changed that. From that experience, i know that diet holds a key.

    I would not have known about UC when my daughter was diagnosed. The information did not come from a very good doctor actually who did not want to stress us.He was going to give us more info on our next visit. Too late. It came from a friend. Like yourselves. Like Adam and this post. Thank you to Paula for being brave enough to post this. Our stories help one another.

    Marguerite

  11. Maggie March 12, 2013 at 6:25 am #

    Paula, words just can’t express the sorrow we are all feeling for you. I hope being on this site brings you some of the comfort you need. God bless you and your family.

  12. Kara March 12, 2013 at 8:58 am #

    Paula,

    Marguerite said it so well. Our hearts are truly breaking for you as any of us with children who have been hospitalized and suffered days of terrible symptoms can relate a little too well. We have had those fears. But I am comforted in knowing that the Bible describes heaven as a place that is so beautiful that words cannot describe it. And I know that the great comforter is now with your son where there is no time and no tears. He will be ready to give you a tour of Heaven one day.

    “Eyes have not seen nor can the mind comprehend the glorious things that The Lord has in store for us.” (The best I can quote that beautiful verse in the bible)

    Praying for your comfort and peace and for Our Loving Heavenly Father to surround you with the love of friends and family to help you through this.

    Kara

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