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Crohn's Disease Forum » Your Story » My Story Crohns For 16 Years


01-12-2013, 11:34 PM   #1
TrulyBlessed
 
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My Story Crohns For 16 Years

So I was 6 years old.. I remember getting this really nasty rash in between my fingers and on my bottom.. NOWHERE ELSE just those two places but the scaling and pus was soo bad and at that age i had no sort of self control to STOP ITCHING like my mom said so it got out of control.. I remember getting bouts of warts all over my legs and it was just so unnapparent as to what was causing it.. I remember bathing in selsun blue every night and crying because of how bad it burned..My mom took me to my pediatrician and he then diagnosed me with a severe case of empetigo.
Then i remember sitting on the toilet and my mom holding my hand while i screamed because my stomach hurt soo bad. After that my mom tried to give me a laxative suppository and thats when she saw my hemmorhoid. my mom once again made me another appointment with my pcp and i remember her yelling at him :" somethings wrong with my daughter , shes losing weight, shes not growing , she is in constant pain in her stomach and shes getting sick every other day!! YOU DO YOUR JOB OR SO HELP ME GOD ILL FIND SOMEONE WHO WILL".. but before my appointment i remember going to the mall with my mom to shop and next thing i know i woke up in the emergency room at the childrens hospital..

They said my white blood cell count was dangerously low and with no explanation they were going to admit me until they could figure it out. The most painful test i had done was when they took samples of my bone marrow. Id never remembered anything worse than that day. you wouldnt think id remember something from that long ago but i think it was so painful that it kinda stuck with me. I was in the Hospital for over 5 months..but it only took 4 and a half months for a team of doctors including my pcp to find out what it was and i was diagnosed with crohns disease..

My starting treatment in 96 was prednisone,imuran, zantac, then corticosteroids which for a while DID seem to do the job atleast according to me..But then 1 year after starting treatment for my crohns, something else started happening to my body and i went into yet another downward spiral with my health.. My ankles, my knees and my wrists swoll up to sizes exceeding a softball at first and then gradually got bigger and bigger.. My back, and my neck were so sore all of the time.. So at the age of 7 I was diagnosed with Juvenile Rheumatoid Arthritis and was then put in a wheelchair and ended up getting a handicapped tag for my moms truck cause for the next year i couldnt walk AT ALL . I had steroid injections into my ankles to stop the swelling and my mom couldnt pay for my medicine and i remember seeing my Rheumatologist hand her $$ out of his pocket.. it was at
that time that we learned crohns and arthritis most often go hand in hand because they are autoimmune diseases. ok i said to my mom still not really understanding.. and i remember her telling me BRING IT ON WE CAN TAKE IT

after 4 years of so many pills my symptoms had gotten worse and my GI decided to do another colonoscopy and i wasnt expecting at the age of 10 to have polyps and diseased intestine but i was too young i think to even realize the severity of my situation i just remember seeing the pictures and saying ewww why is it that color? MY GI then discussed Remicade with my mom and 1 month later i was in the clinic getting my first of many many infusions..

3.5 years ago i got pregnant with my son and my GI said because i was pregnant he couldnt see me anymore at the childrens hospital and id have to find an adult Specialist. I ended up WITHOUT my remicade for the first 2 months of my pregnancy and that threw my body into a major flare up. No doctors were accepting new patients in my city so here i went to the emergency room in the middle of the night scared, worried and upset that nobody was helping despite my cries. My mom met me at the hospital and they had an on call GI doctor come into the room to talk to me about what was going on..Out in the hallway my husband and mom begged this GI to take me on as a patient even though he wasnt accepting new patients and despite the fact i was on medicaid(which he doesnt accept either) he took me on as a self pay patient and got me my Remicade infusion the next day. Entering my 2nd trimester i started noticing i hadnt gained not one lb, and i was getting really sharp pains in my stomach. right lower side.. so needless to say Emergency Room ONCE AGAIN !! but this time was unlike the last, this time i didnt leave .. i literally stayed in the hospital from sept 2009-jan 2010'.. after so much pain medicine and so many tests i had an appendectomy at 5 months pregnant. then at 29 weeks pregnant i had to have an emergency c section December 12th to keep both baby and i alive.(his heart was stopping because my high risk obgyn said that my body was trying to reject the pregnancy). my son was born 3 lbs 11 oz and other than weight COMPLETELY HEALTHY

Now me on the other hand , the pregnancy threw my crohns into the worst flare ever.. So Jan18th soon after having my son i had to have 1 ft of my small intestine removed.. i took months to recover but finally they let me go home..

well my son was still in the NICU so i would go and see him every night with my husband and 1 night i went in feeling pretty cruddy but just thinking to myself i have to see my baby i have to see him.. i get there and im holding him but the nurse said i didnt look too good .. asked if i had fever,, i didnt think so but she took my temp to make sure and said it was 104 .. she said it wasnt safe for me to have fever and be in the nicu.. so she said she would walk me and my husband to the emergency room to get checked out.. i passed out in the hallway and once again remember waking up in the emergency room..

they said my csection was infected so i was hospitalized AGAIN.. During my pregnancy instead of gaining weight i instead lost 18 lbs and after the whole ordeal was said and done, infection cleared, fever gone i was good and ready to go..


I am now 22 years old . Ive had Crohns Disease for 16 years now and for the last 12 years have been on Remicade every 4-6 weeks. Now that my body is rejecting the medicine ill be trying out Humira injections( which is in the same family as Remicade as most of you know). My GI ISNT very hopeful about this medicine but im one of those DONT KNOCK IT TIL U TRY IT types so this is mostly to satisfy my curiousity. Im hoping it will have a positive effect on my body and put me into remission for the first time in 16 years.. if not im sure there are other options but until then ill take it day by day and problem by problem.. im optimistic that one day things will get better. everybody goes through stuff and i believe thats what makes us stronger is having to endure the bs.


TRULY BLESSED
LIVING & LOVING LIFE
01-14-2013, 03:29 AM   #2
Earnellzwifey
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Wow you have been trough the wringer over the years. I am so glad that your son is healthy. I was 3 lb. 10 oz. at birth, to look at me now you would never know I was a premmie. I hope that you GI gives you the go ahead for Humira so that you can achieve remission. That is a goal I have been chasing for a while also.

Do you follow any special diets? What symptoms do you still struggle with?
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Dx 8/31/ 2012 w/ CD
taking:
Remicade,Librax,Lomotil,Prednisone,Probiotic,
Iron,multi-vitamin, B12 injections, magic mouthwash,
Zofran.

32 medical conditions and counting. 22 pills a day with daily blood sugar testing and urinary cathing.

If you live in the loo , because you always gotta poo , then this is the place for you.
01-14-2013, 08:11 PM   #3
TrulyBlessed
 
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hi.. yes im on a special diet as far as not being able to eat spicy, greasy foods, nuts or seeds..

they symptoms im struggling with lately is severe diarrhea, malnutrition, weight loss, fatigue, blood in stool, severe abdominal pain,anemia, fainting, dizziness, and everytime i eat my stomach starts spazzing/cramping.. its hard for me to work so for the last year ive just been a stay at home. hopefully the humira does throw me a bone. lord knows everybody on these forums could use 1

ty for taking your time to Read
01-15-2013, 01:51 AM   #4
Earnellzwifey
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Have you tried a round of prednisone to see if that might help. Also you might want to look into a liquid diet to let your gut rest for a while.
01-15-2013, 02:30 AM   #5
afidz
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Hello and welcome!
You have certainly been through a lot! I hope that Humira will work for you and you can acheive remission. Are you on disability?
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
01-15-2013, 03:48 AM   #6
TrulyBlessed
 
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Earnell ,,, Im on prednisone right now 40 mg / day.. after practically begging to be put on something in the process of waiting for humira to arrive.. and even with liquid diets i still have the symptoms.. i have many many polyps in both my small and large intestine.. digestion of just about anything is a HASSLE but yes lol i have tried just about all of it

afidz,,, Im not at this time on disability.. I dont know if im that bad off.. the way i see it is that there are ppl out there that could use the disability more than i. I may be sick but im far from disabled, though ive had plenty of reps talk to me about it..
07-21-2014, 04:11 PM   #7
sunkissedtexan
 
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Hi, I just googled support groups in CC and found your post on this website. Do you still live in Corpus? I was diagnosed with Ulcerative Colitis in 09 and was trying to find people my age with same or similar illnesses.
07-21-2014, 07:40 PM   #8
DJW
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Hi and welcome. You have been through so much. I hope you get remission. You deserve a break.
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Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
07-21-2014, 07:41 PM   #9
DJW
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Hi sunkisedtexan and welcome.
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