Discussion in 'Fibromyalgia Main Forum' started by razorqueen, Dec 22, 2005.

  1. razorqueen

    razorqueen Member

    well, Jerica made it thru her prep like it was nothing, and the scopes with no problems! She wasn't even nervous, the amazing kid!
    The procedure took aboutt 1 hr longer than it was supposed too, which got us a little scared. Turns out her terminal ileum was formed abnormally, and both GI's tried for a LONG time to get into the small bowel, but could not. they took biopsy's, and one of them bleed quite a bit, so that made things take longer too. Apparantly she has some kind of ulcers in her colon about 50 cm from her rectum that the GI didn't know what it was.
    So, we wait, we wait, for the biopsy's. Possibly 2-3 wks, as it is Christmas time. No treatment, as she doesn't know what to treat for. Her markers were back to normal at our Oct 31 visit. GI thinks she isn't very symptomatic. Obviously SOMETHING isn't normal.
    She may have to have a barium enema yet, depending on the results of the biopsy's. I asked about the camera capsule, as they couldn't see into the small bowel at all, and she is still having the pain on the LRQ. Something has to be causing it. I am not about to ly down and let it go as nothing.
    So that is how things stand right now. Thanks ever so much for your thoughts and your prayers!
  2. Pianowoman

    Pianowoman New Member

    Thanks for letting us know; I have been thinking about you.It sounds like you have made some progress but it isn't as clear as you would like. I'm glad that Jerica tolerated it all so well.

    I hope you can relax a little and try to enjoy some time with the family at Christmas.
    Take Care
  3. libra55

    libra55 New Member

    Poor Jerica, I hope she was asleep for it. I am sorry it wasn't more definitive. I think if it is Crohn's it shows up right away. Mine looked like a bunch of white stones in the wall of the intestine. I was awake for part of my procedure (unfortunately) and the doctor pointed them out to me on the screen.

    I have the rectal ulcers too. They are nasty. Not being able to get into the ileum is consistent with Crohn's too. The intestine scars and narrows. They couldn't go all the way in with mine either. I hope the biopsies are ok. I have a feeling they will be. It sounds so much like Crohn's but if the doctor isn't calling it that specifically then I guess you have to play the waiting game.

    I will keep you both in my prayers.

  4. mbofov

    mbofov Active Member

    Dear Raz:

    I feel for both you and your daughter. Those tests are grueling. I have something else to suggest you look into which helped me a lot several years ago when I had unidentified mystery pains in my lower right abdomen.

    I went to my regular doctor. He did a barium enema. Nothing showed up. Luckily, I had my wonderful chiropractor who does muscle testing. I went to see him, and he had me diagnosed in 5 minutes. My ileocecal valve which connects the colon to the small intestine was intermittently stuck open, literally allowing s*** to back up into my body, making me feel sick. And I had pain where the valve was stuck.

    My chiropractor gently pushed on the affected area to close the valve. I learned how to do it myself when symptoms recurred. I eventually linked this condition to stress. I was undergoing severe stress at the time.

    Anyways, I am 99.9999% certain that if I had kept going to the regular doctors, they would have kept performing all sorts of tests on me and would not have found out what was going and probably would have given me drugs because they wouldn’t know what else to do, which would not have addressed the real problem.

    I’m only suggesting this because you said daughter’s makers in October were normal and the doctor said she is not very symptomatic.

    My chiropractor also diagnosed and helped me a great deal with other digestive tract problems, including an inflamed gallbladder, toxic liver, irritated colon and so on, all without drugs (and all of which I had first seen my regular doctor for without any help). The chiropractor also helped me with a lot of other things, non-digestive tract related.

    Your daughter may not have a stuck ileocecal valve, but whatever her problem is, I think there is a very good chance that a good health care practitioner who does muscle testing (oftentimes chiropractors but other people do it too) may be able to quickly find out what is going on. And it doesn’t cost nearly as much as regular doctors and their tests.

    I’ll say a prayer for you and your daughter –

  5. razorqueen

    razorqueen Member

    your situation sounds interesting! Since Jericas ileum is deformed, I don't know if her valve in normal or not. I guess that would show up on the barium enema. I live in Canada, and the good thing about that is we don't have to pay for our Dr visits or the tests.
    I guess we will just have to continue to play the waiting game (we gotten good at that) and leave it in Gods hands! There is no better place to rest anyways, I just need to remember that!
  6. razorqueen

    razorqueen Member

    this thread is important to me, so if you don't want to repsond, please bump!
    Merry Christmas!
  7. jaltair

    jaltair New Member

    I will keep her, you and your family in my prayers over the next few weeks as you wait.

    I can understand how difficult it is for you to have to go through all of this. When my daughter had problems, I would have given anyting to have her problems so she could be healthy!

    Warm hugs and prayers, Jeannette
  8. CanBrit

    CanBrit Member

    What a shame she has to go through all of this, especially at Xmas time. I'm surrounded by bowel problems in my family. My sister has both Crohn's and Ulcerative Colitis.

    My hubby's Crohn's was just diagnosed a month ago. It was the first time they were able to get into the ileum. They were pretty sure he had it but, unless it's seen, they won't commit. He remembers having severe pain in his teen's and would be taken to the hospital only to be told they didn't know what was causing it.

    Now when he has a flare they put him on a course of prednisone and it clears up pretty quickly. Prednisone isn't very nice but it works. Kind've like Buckley's!!!

    My best to you and your family this Xmas season.


  9. razorqueen

    razorqueen Member

  10. MamaR

    MamaR New Member

    will remember Jerica in my prayers....and for you too!


  11. MamaDove

    MamaDove New Member

    Many of us are thinking of you and your family...

    I kept Jerica in my thoughts all day Wednesday, I too was having a colonoscopy that day and soon after Crohn's was mentioned to me, a script for prednisone (no choice in the matter, I am now very sick) and antibiotics while waiting for the biopsies...

    This is my 10 year anniversary for being diagnosed with ulcerative colitis...I always thought I was fortunate, because I had the lesser of two evils...Now I have the devil's best friend...

    I started the pred, bleeding hasn't stopped, abdomen still swollen PLUS now fibro flare, head aches, throat burns and a bunch of new symptoms I can't even begin to explain...I know it's the pred and will be calling the doc on Monday, even if he is in his ski lodge, and requesting the weaning process for this toxin...

    I pray for Jerica that this will be defined, a treatment or cure given immediately and she will not have to suffer beyond the results of all the testing...I wish I had the answers for all these things happening to all of us, it's not right but as I say in many of my posts, we were brought together for a reason...We NEED to help one another thru these illnesses and together we will prevail!!!

    Thinking of you...Try to enjoy the holidays...I am doing the best I can, but I am trying to smile...Give Jerica a hug for me and remind her that many are praying for her...Alicia
  12. razorqueen

    razorqueen Member

    we sure could feel all the prayers going up for Jerica. I am so sorry, MamaDove that you are suffering so much. That sounds so awful! I pray that you will go into remission quickly!

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