Crohns Colitis

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Joined
Jun 28, 2012
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Hi everyone!

I am a 21 year old female with crohns colitis, i was diagnosed about a month ago after 2 years of on and off stomach pain; i wasnt too shocked by my crohns diagnosis since my dad has severe crohns and now lives on TPN and suffers from short gut syndrome after multiple bowel resections. He, however does not have ulcerative colitis whereas i have a rare case of both. Almost 2 years ago i was noticing extreme bloating after anything i would eat (it couldve been something small like a raisin or big like an apple and i was blowing up, i looked pregnant!!) A few months after that i noticed that i was cramping alot and having alot of discomfort in my lower stomach throughout the day..i went to a doctor and he told me i had IBS. Being the trusting person that i am, i took that diagnosis and went on with my life. Well a year after that (all the while dealing with all the same and worsening symptoms) i found myself in mexico having heavy amounts of rectal bleeding that went on for about 3 weeks! I assumed that i had eaten something bad in mexico and the drs put me on antibiotics. The bleeding went away shortly after harsh meds and i resumed a normal life, the drs also at this time performed a sigmuidoscopy and said that i had internal hemroids and proctisis.

Fast forward 9 months!

9 months later (last month) I found myself having heavy rectal bleeding once again for days on end. I was bleeding, had extreme bloating, extreme cramping and horrible pain after eating anything! I knew this couldnt be normal and went to the ER. At the ER they took a CT scan and said that i had a low grade bowel obstruction and said all my symptoms attributed to that...i truly didnt feel satisfied with that finding and felt that it had to be something else. After getting a second opinion and having an endoscopy/colonoscopy/camera pill endoscopy/biopsies, i was told that i had Crohns disease and ulcerative colitis.

My crohns disease affects almost my whole entire colon excluding the cecum and my colitis is spread around my whole colon in patches. (Now i know why i was in so much pain!!) My dr told me that i am a unique case because my crohns does not affect the 'textbook' areas of where most ppl are affected and that my colitis is the same in that it affects areas that arent usually affected.

I was originally put on Asacol but after having some bad side affects i was switched to Lialda. I have comletely changed my diet and all foods that upset my stomach in any way have been eliminated!

I am trying something new and i have been drinking liquid chlorophyll. I read online from other crohns patients that it has helped them so i figured id give it a go!


I decided to write on this forum to share my story but also because i desperately need some feedback and fast!!! HERES WHY!!!!! -- the dr had ordered that i get an ibd seriology blood test done..I believe everything happens for a reason so i find it interesting that the lab that i went to ended up doing a different test then they were supposed to do and in that wrong test i actually came up POSITIVE with 3x the amount that a normal person would have of an antibody called PROTIENASE 3. the dr told me (and the internet) told me that this antibody (PR3) shows up in 95% of ppl who have a very rare disease known as Wegeners Granulomatosis. Apparently, this disease, left untreated, will kill the patient within months. I havent had a biopsy yet to know for sure if i have this disease but i NEED TO KNOW IF ANYONE ELSE WHO HAS CROHNS HAS TESTED POSTITIVE FOR THIS PR3 ANTIBODY AS WELL??!!! I am 21 years old and am not ready to go anywhere!! Please let me know!!!!


Thank you for reading my story!!:))))
 
Hiya kreb and welcome :)

Very interesting. I hadn't heard of proteinase 3 so did a little research. Indeed, it's not something commonly found in IBD patients. I also found that Wegener's disease can mimic Crohn's Disease.

Probably not what you wanted to hear while you're awaiting biopsy, I realize :( However, I have to believe that there are plenty of other potential causes for increased proteinase and Wegeners is super rare, so the stats are on your side :)

I haven't seen anyone else mention these on the forum. We're here for you though and I hope you keep us updated!

*hugs*
 
Welcome tot he forum!! :)

Like David said, it sounds like Wegner's. My mother's friend's, daughter recently got diagnosed with that at Children's hospital in Indianna. Her kidneys were shutting down & she was having blood in her stool. Wegner's is rare though & you didn't mention having Kidney issues. She now takes Prednisone & Imuran which are medications used to treat Crohn's as well. As far as I know, the goal of treatment for both conditions are simmilar: Supress the immune system.

I didn't know you could have UC & Crohn's? Ulcerative Colitis is a tottally different condition that can be cured through removal of the colon. Crohn's Colitis is just a classification of Crohn's & means it mainly affects the colon. Which is actually common.

This condition usually gets better with time & your doctor's seem very supportive! I'll be praying you find an answer soon as to what crazy stuff your body is trying to pull on you ;) Thanks for sharing! I learned something new today :D
 
Thank you for you feedback and thoughtful messages!! I have heard that wegeners can cause kidney problems, i have been having some back pain and extremely painful burning urination for almost a month now:( i went to a urologist and im having a cystoscopy performed on monday..i really hope and pray i dont have wegeners, ive read that without treatment the patient will die and with threatment only some ppl go into remission...and yes, the dr told me that only 5-10% of patients will have UC and crohns..apparently im a rare one!!
 

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