Warning a long read..A diagnose of crohn's

Discussion in 'Fibromyalgia Main Forum' started by niece, Apr 11, 2011.

  1. niece

    niece New Member

    Haven't posted in a long while just been really sick......
    Have had a couple hospital stays the last one was march 30 thur april 5 and had all the test and finally they found what was wrong.....

    To shorten this I've had stomach troubles since 1993 and in 1998 had a nissen fundoplication to repair a hernia.....
    I have chronic dizziness that took me out of work in 1998 also......

    In 2005 I had a positive blood test for crohns but when they did the colon scope it was clean......So I struggle on.....In

    June 2010 I started losing weight and the gastric I went was (well) you had all the test and all we can find is a infection in your stomach that he treated like h pylori even though the biopsy was negative.....

    So change gastro doctors in july and they were about the same cause they could see all the test that I had done through the years but go in with a scope EDG and stretch my esophagus and saw lots of infection in stomach and treated it with heavy antibiotics for 14 days......

    And I struggle along and in jan 2011 I went to ER and was admitted and they loaded me up with fluids and IV antibiotics because white blood count was HIGH........

    Send me home and I was to see my doctor I had been seeing the PA at this new office and I had to cancel feb 4 due to husband having to go out of town and ask to make it for the next friday they her last day was the 14 I said well just with one of the other doctors......

    So that was the following friday ....Husband and I saw him that day and this doctor was the one that did my EDG in oct......

    AND he started the you have had all the test and they were all OK ( dsoctor did air quotes here) you did have that infection 2 times......

    Husband was mad at this time and kinda turned his back to doctor...
    Visit over with just a another scrip of raglan hubby took off I walk in the hall with doc

    AND he said I think I made him mad I said well you blew him off he was trying to tell you that even though she has had all the test (there is something going on)

    He said will you apologize for me I SAID NO you can do that the next visit.......

    Well he decided to order a stomach emptying test so I had that done feb 25 and was diagnosed with gastric pierces and started me on a compound drug to help my stomach empty....

    Started it on march 21 after the reglan wasn't working then wound up in ER march 23

    AND they said well you have gastric pierces so they gave me zofran and pain shot and sent me home....

    Husband carried me back to the larger hospital friday morning said the same thing except I did get some IV fluids I was really dehydrated......

    But was sent home Skip on ahead I struggle through sat and sun and mon and tues....

    I had a appt with stomach doctor wed.....

    AND husband signed me in and doctor was behind the glass there and saw me in the waiting room they called me right on back and got weight and blood pressure and he walk in and said I have faxed papers to the big hospital to admit you.....

    I will meet you there at 2 we came home and hubby packed.......

    I don't even remember nothing but pain and dry heaving......

    Got there and they got me all hooked up and started me on medicines kinda knocked me out I was screaming and crying so much.....

    Did the light down my throat the nest morning and they went 6 inches below my stomach into small intestine and there was

    so much lesions there no wonder the food could not dump in to my small bowel said my stomach had lots of infections so

    he did a lot of biopsy didn't see any gastric pierces though....
    Did another barium test Saturday took 3 hours on a hard medal table.....

    Got all the results friday april 8 and all positive for crohn's
    small bowels....

    And now the prednisone for 5 weeks to clear up the infection quick is causing blood sugar to go up in the 400 even with medicines so have to see my GP tomorrow to see if we can get that under control......

    Taking 4000mg of pentasa and 40 mg of prednisone.....

    Sorry that this is so long I'm so overwhelmed

    BUT NOW I am being treated and I had been untreated since 2005 when the blood tested positive....

    I will have to be on medicine for life and pray for long remissions......

    So do any of you know any thing about small bowel crohn's

    Or encouragement on how I'm going to get through this.....
    OR and hug and prayers to help me get through this......

    Husband Bless his heart he says don't cry baby they now know that you are sick and you are being treated and your going to be ok....Just gotta love him.....

    please forgive the typo's OK

    Will stop here
    y'all take care
    hugs
    niece
  2. gb66

    gb66 Well-Known Member

    You have been through way too much for one person. I am so sorry you're having these problems. Maybe now you're getting some real help. Sounds like your husband is a really good man and loves you very much.


    I have recently been hospitalized for a couple of days and know what you're saying about the hard tables, beds, etc. It really hurts the fibro.
    I'm having some bowel problems but haven't had any of the tests yet. I dread more tests. I'm dealing with possible diabetes and some other issues as well as teeth issues and can certainly sympathize with the feelings of being totally overwhelmed.

    It all seems to come at once lately. I wish you all the best in feeling better and getting some of the problems under control. You sound like a very strong, brave woman. I wish I had half your strength. I really mean that.
    GB66
  3. mbofov

    mbofov Active Member

    I'm so sorry you had to go through all that. I've read that for people with celiac disease it takes an average of 7 years to get a diagnosis (!)

    So I think the most important thing you can do right now is educate yourself about all your treatment options, both standard and alternative, and don't rely on your doctors to tell you everything. Many if not most doctors are taught to give out drugs, but don't know about proper diet and nutrition and their role in health.

    A really brief search on the internet showed that people with Crohn's often have a high ratio of omega 6 fatty acids to omega 3s, and this causes inflammation, so fish oil or other source of omega 3 fatty acids often recommended. There are diets that are recommended.

    So many drugs have toxic side effects, I think we're always better off using food and natural supplements whenever possible in place of drugs. But anyways, educate yourself. It's the most important thing you can do so you know what all your options are. Your doctors really may not know what they are.

    On the plus side, you are very lucky to have such a sweet caring husband!

    Take care -

    Mary

  4. ilovepink4

    ilovepink4 Member

    i am glad you got some answers...you certainly went to h@ll and back to get them.....Kudos to hubby!!! Mine never will go to the doc with me, nor will he read anything on fibro.....what a sweet guy!
    pink
  5. Mikie

    Mikie Moderator

    I can't help with info but I keep you in my prayers. You've been through a lot. I worked with a young guy with Crohns and I know how painful it was for him.

    Love, Mikie
  6. niece

    niece New Member

    OH MY GOSH I had another hospital stay from wednesday until today (sunday) feel some better still losing weight down 10 more pounds just from admit date.....

    thank you all so much for all your thoughts and prayers.......

    Dehydration and pain is so bad for me at this time........
    I'm still on the steroids and pentasa.....

    Had to have morphine for the pain before I could get some relief....

    I'm so overwhelmed with this and scared...

    Doctor said I have got to drink 3 quarts of fluids
    a day or more if I can.......

    thank y'all

    maybe I can write more later

    y'all take care

    hugs niece

  7. richvank

    richvank New Member

    Hi, niece.

    I, too, am sorry about what you have been going through.

    I urge you to read about Dr. David Gregg's work on the treatment of Crohn's disease at www.krysalis.net

    Dr. Gregg has found four non-drug treatments for Crohn's disease, and has found that at least one of the four has worked in all the cases he has encountered. I know that this is for real, because I personally knew two of the people who had Crohn's disease and were helped by his treatments. The emails he has posted on his website from people who have been helped are real. He does not profit financially from these treatments. Two of them are available over the counter. The third is a diet. The fourth does not currently have a supplier. They are (1) Dimethylsulfoxide (DMSO), (2) melatonin, (3) Elaine Gottshall's specific carbohydrate diet, and (4) pig duodenum powder (which supplies prosecretin).

    I urge you to check this out.

    Best regards,

    Rich

    Three of the treatments are still available.