Thursday, November 5, 2015

The "Good", The "Bad" and The "Ugly" - Treating Crohn's Disease (Part 2)

For those who haven't read part 1 of my epic Crohn's treatment story, you can go back and read it be clicking HERE.  An extremely short recap: I had been through 8 months worth of different combined therapies and nothing had worked to control my Crohn's Disease.

Little did I know that my journey was really just beginning and it was going to take a turn for the nasty. In February 2013, I had my colectomy surgery (removal of the colon/large intestine/large bowel), donating the organ to research in hopes of finding a cure so others don't have to go experience my story for themselves. I'm planning on writing a completely separate post about the colectomy, so I won't say much about it here other than we were all hoping that this was where the story would end.

It was about a month after my colectomy when I knew that things weren't going well. I was still passing a lot of blood, having low energy problems and just feeling plain awful. At first the doctors were wondering if it was just that I was a slow healer from the surgery, so we gave it a bit of time. By July/August we knew that it wasn't just a problem of "not healing" that there was something else going on. Despite my earlier major blood loss from the bleeding, my body always kept up and my blood levels would stay normal (surprising my docs!). Now, my iron was basically 0 so I spent my summer getting weekly IV iron infusions. August rolled around, the doctors decided to go in and take a look at what was going on again, and discovered for the first time that I had inflammation in my stomach and MAJOR inflammation in the duodenum (the first area of the small intestine after the stomach). The doctors said that this type of damage could be seen with Celiac Disease, so I went on a strict (and horrible!) gluten-free diet for 6 months. We bought new toasters, learned new ways of cooking, and tried every type of gluten-free pizza out there without finding one we liked. Not once did we cheat on the diet. But the diet wasn't the problem.

After 6 long months gluten-free, the doctors went back to take another look inside and found that things were even worse than they had been. I could have told them that from how I was feeling! The doctors started me on Humira, another biologic medication designed to suppress the immune-system similar to Remicade that is injected every 4-12 weeks like Remicade. The Humira shots were painful, I'd rather have an injection of just about anything else. But if it controlled the symptoms it would have been worth it! Unfortunately the Humira left me looking like a car-accident victim. I had at one point over 80 bruises on my body. Here's my legs:



I also had sudden cell death on my arms that turned them brown: 


This was still nothing compared to what was to come. We decided that Humira was not the medication for me. 

I spent that summer (2014) as an in-patient at the hospital for the entire summer when my weight dropped way too low. I was put on TPN, which is a form of nutrition given through the IV. The doctors started talking the 's' word again, meaning more surgery. Instead, they decided to try Remicade again. 

From the start it didn't go well, I wonder if it were a sign of things to come. I had a rash, shortness of breath and fever during my first infusion. But we pushed ahead. After my initial 4 doses they found that I wasn't retaining any of the medication as I should be. So they increased the dosage. Then this happened:



At first the doctors thought I was breaking out in hives, the itch was incredible and wearing clothes was extremely uncomfortable. Benadryl didn't take the itch out of it. Benadryl cream burned to put on. As it developed it became clear that it wasn't hives. The hospital gave my mom cream to put on it, but everytime she touched me I would scream in pain and my skin would start bleeding. Eventually dermatologist confirmed that I was in the small percentage of Remicade users who developed psoriasis from the medication. The psoriasis covered 70% of my body and was the primary reason why I was hospitalized for a month. Ironically, Remicade is used to treat psoriasis!

The doctors decided that I needed both a treatment for my Crohn's Disease since we had now gone through everything that was typically used. I had to stop the methotrexate (a form of chemotherapy) injections because they made me violently sick. I couldn't take the Imuran because there was something to do with my genes or blood that said it wasn't a good choice for me. Stelara (ustekinumab) is also used in the treatment of psoriasis but is just now being investigated for its potential usefulness in treating IBD. Thankfully, because of the psoriasis, I didn't have to apply for special access to have this medication. Even more thankfully, because of the expense of this drug, the pharmaceutical company gives it to me for free since we would never be able to afford it. I started Stelara this past May. 

Stelara really upsets my stomach, but the injections are a lot better than the Humira injections. Unfortunately, I just recently had another set of scopes done to see why I can't eat, and they've found some new inflammation, so it might not be working to help control the disease. It has been wonderful for my psoriasis though!

I hope that my treatment story highlights the need for more research into treatments and a cure for this disease. Stelara is one of the last options remaining. Another newer medication on the market, Simponi, works similar to the Remicade and Humira, so the doctors feel that it likely won't be as effective for me since I've already tried two medications in that family. There needs to be more research into refractory kids like me. Living with Crohn's Disease is hard enough on a child, but to already run out of treatment options is scary. I will have this disease for the rest of my life. I'm 11 now. If I live until I celebrate my 100th birthday, that's 89 more years of living with this disease. I sure hope that in that time they can come up with more effective treatments so that I, and people like me, can have a break from the "roulette wheel of medicines". 

19 comments:

  1. I suffered from UC(ulcerative colitis) and CROHNS DISEASES for over 4 years, i was hopeless until one of my friend directed me to her dr called Dr uwenbo, she saidha's the dr has cure that cures UC, she also said the dr has helped some of her friends UTI, BV, HALITOSIS, HSV,HPV, CANCER,ALS etc, i never believed her but after a lot of talk i decided to contact him. just few weeks ago i contacted him and he told me what to do which i did and he sent to me a herbal medicine with prescription on how i will take it for a period of days. After i finished taking the medicine he told me to go for a check up which i also did and when the result came out i was surprised to see that cured. I am proud to tell you that i am the most happiest person on earth.Big thanks to Dr Uwenbo cure. i pray you find solution in him just i did. For more information on how to get cured contact him on his active email: dr.uwenboherbalhome@gmail.com, druwenboherbalhome@outlook.com OR whatsapp +2349052309005 and get your help..

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  2. I've decided to post this treatment officially for others out there as I reflect on my personal journey. Many are out there who not only feel lonely but also lost due to this dreadful disease. Crohn's disease has been labelled as unpredictable, incurable diseases causing immense physical pain, inflammation and cramping that attack the digestive system. I was diagnosed with Crohn's disease 7years ago. It’s a real illness that doesn’t ever truly go away, even after hospitalisation or surgery. I really do take all medicine and treatment plan but with no serious improvement. After several years of coping with pains and depression, I was introduced to Dr (Mrs) Vanessa Herbal product, I finally feels my illness is under control and permanently cure using this Herbal Remedy. Can expert/professional here explain the word "incurable"? because I'm another example of possibility. No more pain, inflammation or cramping for over 1year and I get better daily.Life delivered me a catastrophe, but I found a richness of soul. Conclusively, be it any condition, a healthy diet and natural treatment is a road to fast recovery. E-mail: drvanessah@gmail.com, For queries or more information. Better days will come

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  3. HELLO everyone! Still don’t know the right words to express my Gratitude to the Great Dr IBUKUN After been diagnosed with the HIV VIRUS for the passed 5yesrs, i was given so many health prescription and advice with no
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  4. I was cured of HIV with the used of natural herbs. My name is luci amber and am from US. I love herbs so much. Most times, injection and drugs are just a waste of time. I was cured 8 months ago, i suffered from HIV for 13 yrs but with the help of Dr.Nana herbal medicine, i was cured within few weeks of drinking the herbs he sent to me through courier delivery service. This same doctor also cured my Aunty from herpes, as soon as i heard she had herpes, i quickly refer her to Dr.Nana and she was cured too after drinking his herbs.I have referred more than 15 persons to Dr.Nana and they were all cured from their various illness. Have you taken herbs before?. You have spent so much money on drugs,injections,surgeries etc and yet you have no good result to show for it. Contact Dr. Nana now, he is a herbalist doctor, i assured you of a cure if you drink his natural herbs. Dr.Nana have herbs that cures Hiv, Herpes, diabetics, asthma, hepatitis, HBP, STD, cancer, chronic, etc. Contact Dr Nana through his Email address on: drnanaherbalsolutionhome@gmail.com or WHATSAPP/CALL him on+2347014784614. Please share the good news to other people once you are cured

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  5. My name is Roseline Jude, i want to tell the world about how i got cured from HIV Disease by Dr. Ozala. i was Infected with HIV Disease for so many years and i was tired of life because of the sufferings i was going through, so one faithful day a friend of mine gave me a contact of a herbal doctor who cured her cousin from HIV Disease and immediately i contacted the Doctor on his email address: (drozalaherbalcure@gmail.com) and his whatsapp: +2348156857280 , and immediately the Doctor sent me a herbal medicine and told me to take the medicine only at bed time with is at night and i did and immediately the HIV Virus DISAPPEARED and i was cured from HIV Disease, the name of this Doctor is Dr Ozala.. so if you are infected with HIV Disease or any other
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    once again, Dr. Ozala thank you very much for what you did for me am very grateful...

    Here is His website for other kind of cures;

    dr-ozala-herbal-cure.business.site

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  6. Greetings to every one that is reading this testimony. I was HERPES positive for 5years and all the means i tried for treatment was not helpful to me, but when i came on the Internet i saw great testimony about DR omohan on how he was able to cure someone from HERPES, and any disease this person said great things about this man, and advice we contact him forany problem that DR omohan can be of help, well i decided to give him a try, he requested for my information which i sent to him, and he told me he was going to prepare for me a healing portion, which he wanted me to take for days, and after which i should go back to the hospital for check up, well after taking all the treatment sent to me by DR omohan i went back to the Hospital for check up, and now i have been confirmed HERPES Negative, friends you can reach DR omohan on any treatment for any Disease, reach him on Email (dromohanherbalmedicine@gmail.com) whatsapp number (+2348164816038)

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  7. HOW I GOT CURED FROM HIV I was diagnosed of HIV and i have tried all I can to get cured but all to no avail,,until I saw a post in a health forum about a herbalist man who prepare herbal medications to cure all kind of diseases including HIV ,at first I doubted if it was real but decided to give it a try,when I contacted this herbalist via his email and he prepared a HIV herbal cure and sent it to me via email: drakuzaodiagbe01@gmail .com delivery company service, when I received this herbal medicine, he gave me step by direction on how to apply it,after applying the way I was instructed,I was totally cured of this deadly disease called HIV , all thanks to Dr Akuza ..Email this great herbal doctor via his email drakuzaodiagbe01@gmail.com) or whatsapp him Via:+2347018206056 HE CAN ALSO CURE SICKNESS LIKE
    {1}HIV/AIDS
    {2}DIABETES
    {3}EPILEPSY
    {4} BLOOD CANCER
    {5} HPV
    {6} ALS
    {7} HEPATITIS
    {8}LOVE SPELL
    {9} SICKLE AND ANAEMIA

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  8. aludos a todos los que están leyendo este testimonio. Fui positivo a HERPES durante 5 años y todos los medios que probé para el tratamiento no me ayudaron, pero cuando entré a Internet, vi un gran testimonio sobre el DR omohan sobre cómo pudo curar a alguien de HERPES y cualquier enfermedad de esta persona. dijo cosas maravillosas sobre este hombre, y el consejo lo contactamos por cualquier problema que el DR omohan pudiera ayudar, bueno, decidí intentarlo, me pidió la información que le envié y me dijo que iba a ir a prepararme una porción de curación, que quise tomar durante días, y después de lo cual debería regresar al hospital para un chequeo, mucho después de haber recibido todo el tratamiento que me envió el DR omohan y volví al Hospital para un chequeo Arriba, y ahora he sido confirmado HERPES Negativo, amigos, pueden comunicarse con DR omohan con cualquier tratamiento para cualquier enfermedad, contactarlo por correo electrónico (dromohanherbalmedicine@gmail.com) número de whatsapp (+2348164816038)

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  9. I was diagnose with hpv virus for 5years i broke up with my boyfriend because i contracted the virus from him, luckily i found a herbalist name Dr. onokun everyone testify good of his natural treatment i picked up his address and contacted him. he truly treated me with natural herbs in a week and i got cured. i share this post because ever since i got this treatment I'm perfectly ok with my health. i contacted him through this email.. dronokunherbalcure@gmail.com

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  10. Its a pleasure for me to write this testimony about this wonderful thing
    that happened to me last week on how i got my HIV aids cured, i have been
    reading so-many post of some people who were cured of HIV, but i never
    believed them, I was hurt and depressed so I was too curious and wanted to
    try dr.idedia then i contacted him on his email on
    dr.idediatraditionalhealinghome@gmail.com when i contact him, he assured me 100% that he will heal me, i pleaded with him to help me out, its a great success that he healed just as he promised, he
    told me that in three days time that i should go and check on my HIV
    status, I was floored that when i went to the hospital to check of my
    status that i was HIV negative, i never thought possible that dr. idedia
    can do miracles, i never really believed in magic but I played along with a
    little hope and faith and after everything but dr Idedia changed my
    life and made me a true believer you can contact him on
    dr.idediatraditionalhealinghome@gmail.com or whattsapp Number: +2349074505296
    so he can help you out. he said that he is also specialize on the following diseases: HERPES, HIV, ALS, HPV, DIABETES, HEPATITIS B, CANCER,SICKLE CELL, VIRGINAL DRYNESS, And Bring Back Yours Ex back.

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  11. Hello everyone do you know that herbs is now used to cure all kids of virus and infections, few months ago i was having HIV. And my doctor gave me drugs at the hospital were i did my test, he said to me the drugs he gave was just to prevent the virus, that it cant cure it, i told my friend about these virus and he refer me to these great healer, i have no choice but to contact the doctor, these great herbal doctor ask me some few questions, and he prepare the herbs and deliver it to me in my country with use of DHL delivery service he gave me the prescriptions after i have receive the herbs as i'm writing these testimony now i'm 100% free from HIV all thanks to dr Freeman Osas for his good work you can contact he via his email drosasherbalhome@gmail.com or reach him via Whatsapp number +2349035428122

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  12. suffering from HIV disease for over 4 years, i was hopeless until one of my friend directed me to a man called Dr Udi, she said he cures the sickness and also said he has also helped her friend, i never believed her but after alot of talk, i decided to give him a try, just few days ago i contacted him and he told me what to do which i did and he gave me a herbal cure which i took and then he told me to go for a test which i also did and when the result came out i was surprised to see that i am negative. I am proud to tell you the i am the most happiest person on earth I Give thanks to Dr Udi.. If you are having any problem and you need help, You can contact him with his email drudiherbalhome@gmail.com or Whatapp: +2348051243538.

    ReplyDelete
  13. I am John Danilla from UK( northern ireland), i want to share a
    testimony on how a powerful spell caster cured my HIV disease, i was
    diagnosed of this disease, in the year 2009, last week i saw a testimony on
    Dr.Akioya on how he cured an HIV patient, so i contacted him through phone
    and he asked me to email him, which idid, so he told me that all my
    problems is over and then he decided to do an healing spell spell for me so
    after he finished it, he told me to wait for just 24 hours and then i
    should go for a test, so i really did as he had said, so my greatest
    surprised when i went to the hospital to go for an HIV test, the Medical
    doctor diagnosed that, i am now HIV negetative at first i was amazed and
    now i have come to realise that this spell caster Dr. Akioya is a very
    powerful one and a real spell caster. So viewers of this should please join
    me in my celebration for i am the happiest man on earth today and if you
    want to contact him, you can do this via his email
    (drakioya17spellhome@gmail.com or call him or whatsapp him
    +2348105257464.

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  14. hello everyone . I want to share this testimony how Dr.lucky help me, i was having a small penis and weak erection problem. I can't make love to my wife for 5 minute and my penis was just too small a full grown man like me having 3 inches penis and to worsen it i don't last in sex i cannot even last 5 minutes it was really a thing of shame to me. My wife was really tired of me because my sex life was very poor,she never enjoyed sex,i was always thinking and searching for a solutions everywhere and i came across a testimony of Mr john kelly testifying that DR LUCKY helped him to enlarge his penis,i decided to give him a try and to my greatest surprise in less than one week of using his herbal cream, my penis grow to 7 inches i couldn't believe my eyes and as i speak now my penis is now 11.5 inches and i do not have weak erection again. I can make love to my wife longer in bed. And my marriage is now stable,my wife now enjoy me very well in bed. You can contact him
    drluckycenter111@gmail.com
    Thanks for Enlarging,. my penis sir, you indeed save my marriage...I am really grateful sir. whatsapp number +2348035583954

    ReplyDelete
  15. i already gave up on ever getting cured of HSV2 because i have try many treatment none of them work out for me i have go to different hospital they always tell me same thing there is no cure for herpes when i came across a post about Dr ohunyom, in the net from a lady called Angela i contacted him and he reassured me with him herbal medicine which i took according to the way he instructed, that how i was cured. I doubted at first because i have been to a whole lot of reputable doctors, tried a lot of medicines but none was able to cure me. so i decided to listen to him and he commenced treatment, and under two weeks i was totally fee from #Herpes. i want to say a very big thank you to DR ohunyom for what he has done in my life. feel free to leave him a message on email drohunyom@gmail.com and also WhatsApp him +2349060579973..
    He can still be able to help you with this herbs medicine:
    1...ALS CURE/DIABETES CURE/EPILESY/HPV CURE/LUPUS/HEPATITIS/CANCER/GOUT

    ReplyDelete
  16. i already gave up on ever getting cured of HSV2 because i have try many treatment none of them work out for me i have go to different hospital they always tell me same thing there is no cure for herpes when i came across a post about Dr ohunyom, in the net from a lady called Angela i contacted him and he reassured me with him herbal medicine which i took according to the way he instructed, that how i was cured. I doubted at first because i have been to a whole lot of reputable doctors, tried a lot of medicines but none was able to cure me. so i decided to listen to him and he commenced treatment, and under two weeks i was totally fee from #Herpes. i want to say a very big thank you to DR ohunyom for what he has done in my life. feel free to leave him a message on email drohunyom@gmail.com and also WhatsApp him +2349060579973..
    He can still be able to help you with this herbs medicine:
    1...ALS CURE/DIABETES CURE/EPILESY/HPV CURE/LUPUS/HEPATITIS/CANCER/GOUT

    ReplyDelete
  17. Please you all can see the good work with living prove of herpes cure https://drabrahamherbalhome.webnode.com

    ReplyDelete
  18. Joy and happiness is all i see around ever since i came in contact with this great man. i complained bitterly to him about me having herpes only for him to tell me it’s a minor stuff. He told me he has cured thousands of people but i did not believe until he sent me the herbal medicine and i took it as instructed by this great man, only to go to the hospital after two weeks for another test and i was confirmed negative. For the first time in four years i was getting that result. i want to use this medium to thank this great man. His name is Dr aziegbe, i came in contact with his email through a friend in UK and ever since then my live has been full with laughter and great peace of mind. i urge you all with herpes or HSV to contact him if you willing to give him a chance. you can contact him through this email DRAZIEGBE1SPELLHOME@GMAIL .COM or you can also WhatsApp him +2349035465208
    He also cured my friend with HIV and ever since then i strongly believe he can do all things. Don't be deceived thinking he does not work, i believe if you can get in contact with this man all your troubles will be over. i have done my part in spreading the good news. Contact him through his email and you will be the next to testify of his great work.

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  19. Am testifying of the miraculous work of a great traditional doctor called @dr_ahonsi I have been suffering from herpes since last 2 years with my Husband but today I am happy that am cure from it with the herbal medicine made by @dr_ahonsi the great healer, I was browsing the Internet searching for help when I came across a testimony shared by someone on how @dr_ahonsi cure her from Herpes Disease. I quickly contacted him to get the cure and today i am now free from the Virus, Email him now for help at (drahonsi517@gmail.com) you can also call him or whatsapp him on this (+2349046402730)

    ReplyDelete