Crohns Disease advice & WARNING ~ BEWARE

by Marydon Ford
(Maryland)

After a life of bowel problems, at age 39 I was finally diagnosed with Crohns disease. Two yrs of prednisone nearly killed me, I was an immobile vegetable from the steroid. No one at Kaiser Permanente would listen, it was their way or no way. I put my foot down & asked for a resection, which I finally got after a long battle. (Kaiser Permanente up until the diagnosis, 'patted my hand', handed me tranquilizers & ignored my Crohn's symptoms, sending me home.)


I went thru surgery with no ill effects for a few years & then became active Crohns again. ASACOL was my savior as I refused all steroid treatment ever. I am today still on Asacol.

ASACOL carried me for 10 to 15 yrs. with no problems at all & I had a nice life, occasional 'little' issues but no major medical problems. About 10 yrs. ago I started having little problems occur & all KAISER PERMANENTE gastro Drs. wanted me to take different forms of chemo to treat the Crohns. We left Kaiser in 2005. In 2007 I had some real blockages & was hospitalized several times in 10 mn. period. The new gastro Dr., too, preached chemotherapy treatments. I refused to the day I die to do that. (KAISER DRS. don't bother to take the time to listen, they are rushed on timeframes for patients ... I should tell you how they nearly let me die from a heart condition that was a birth defect they never told me I had. Umm-hmm!)

Feb. 2008 I was operated on for a second resection, I demanded. All Drs. wanted chemo treatment, period. Once the surgeon got in side of me, he could find NO Crohns activity at all, but this 4" to 6" area that was viewed on a Cat scan & several other tests was merely a massive build-up of SCAR TISSUE.

NOT ONCE DID ANY DRS. EVER MENTION SCAR TISSUE TO ME

Once the surgeon started to remove the scar tissue the bowel immediately started to restruct itself to widening (I had a fishline passage way til then) itself, the colon color became healthy & the tissue was fine. The surgeon, Dr. Kevin Hurrt, came into my room the next day & immediately stated 'it is a good thing you didn't take those pills'.

Had I not been fiesty & stood my ground I would have listened to all these Drs. & put my body into harms way with all the horrible side affects that come with the Imuron, Ramicade, etc., possibly causing more deadly medical issues.

Also, I had spoken to another young man who had 7 surgeries & eventually found a Dr. to reconnect him ... he explained to me since he has been taking Aloe Vera orally several times a day, he has not had to see a gastro Dr. in 10 yrs. & there are no traces of Crohn's at all.

My suggestion is to NOT take every Drs. advice. Do your research yourself, then decide sensibly what is right for you. I am now searching for a new gastro Dr. I cannot afford to trust my body, a gift to take care of, 900% to any Drs. after the mistrust, misadvice & misdiagnosis. The internet is full of wonderful articles to help guide you to make the right decisions.

TTFN ~ Marydon

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Doctors are not always right NEW
by: Annette

Hello,

Thank you so much for sharing your story. I am so sorry that you have had a such a difficult time. The moral of the story is that yes, people have to also take responsibility for their own health and to research the disease.

We completely put our faith in the hands of doctors but they are not always right. I have had mis-diagnosis about things (not Crohn's related fortunately) but still serious and my mother had a terrible time with Crohn's disease and she seriously hated going to the doctors or hospitals as they made a lot of mistakes with her.

I think the important thing is to research all of the information relating to Crohn's and to listen instinctively to how your body is. I am not suggesting that people self-diagnose or avoid going to the doctor, far from it, but if you have been placed on drugs and you feel worse, don't be afraid to tell them.

My mother was bombarded with information all of which made very little sense to her as she was reeling from the diagnosis and it would have helped if she could have seen a counselor or spoken to a nurse afterwards, but there was no aftercare for her at that time. There was just a prescription to get on with it.

I know many people who have Crohn's and have received a lot of support from the medical world and medicines have changed their lives, but I also know people who prefer to help themselves in addition to taking medicines and to try to establish potential triggers and to eliminate these factors as much as possible:

Stress
Smoking
Alcohol
Certain foods

I personally believe in listening to your body and considering what might help you. Crohn's affects people very differently and what works for one person, will not work for another. Seek medical advice of course but also don't just rely on medicines when you could be doing something that makes your flare-ups worse.

Does anyone else have any medical stories to share? I would be interested to hear how you got on, whether the advice was good or bad or if you have managed to improve your own health.

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