Having trouble getting diagnosed.... don't believe every doctor --- my story

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Hayride
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/12/2008 5:32 PM (GMT -7)   
I am newly diagnosed... as of May 2008. It has been five years that i have been living with Crohn's without being diagnosed. I went from 160 pounds to 120 over the course of one year. I was hospitalized and released with anorexia at the age of 21. Also i was led to believe i might have had hiv/aids for one week. A few months after that... i went to a new set of doctors. One sent me to another then to another.... six total. Dismissed me without a diagnosis. I felt crazy, but i was too tired to bother caring about anything. Meanwhile, i was in and out of college at the time. I went to one more doctor. Dr. T, an internist. He ran some more tests ... then in his office he told me to stop wasting the medical field's time, making me feel all kinds of insane. Very bad doctor. After that i did my own research, and i thought I had celiac disease, some of same symptoms, abdominal pain, bloating, gas, decreased appetite, diarrhea, nausea and vomiting, stools that float, foul smelling gas, unexplained weight loss... So, for two years i did not eat any wheat, oats, are barley. I got better, i think placebo effect. The power of the mind is overwhelming! But still i was sick... I had two fistulas removed and I asked the doctor who removed them why i was getting these and he said "oh, it happens to some people." I was 23 and 24 when i got them. I did my own research on wikipedia... and found it's not normal for people to just have fistulas.

I researched the best doctor's where i live, and I had to fight my way into his office and waited for three months for an appointment. He diagnosed me in two weeks. He takes his time with you and looks at the whole body, so nice. My colonoscopy confirmed the Crohn's and some damage along the way. No surgery! I am now healthier than i have been since i was a teenager.

I am now on a of cocktail drugs. Pentasa, eight a day. Entocort, 3 (side affects severe insomnia and mood swings, one time a week i would go crazy--- not myself a wacky moment only two or three nights out of one month). Now i take two Entocort and no side affects. I take Clonazepam up to 5mg at night to sleep. Prilosec to help with ulcers, no side affects. Iron three times a day... my levels are rising started at 6 now at 9, goal 20. My own pills that i take are Probiotic, Multi Vitamin, Super Enzymes, Omega 3, Kombucha(Drink). I just starting taking 6mp at 50mg... two weeks ago, at first i was so physically drained from the insomnia, i was walking down the hall at work one day and fell, my legs gave out. I went home early and slept for 16 hr's that day and 10 hr at night for a few days. Now, i am back to normal. But i am developing a heat rash or something...

Over the course of my experience with this disease i have developed a hydrocodone habit... Doctor prescribed.
My soul is having this experience in my body,,, what can i learn from this?
This is my story... still evolving.

Look up Louise L. Hay her book and dvd are helping me!
And don't give up, the medical field has its place and can be great... but i have faith that you can heal your life.

Doctors are people just like you and me... they can get it wrong

scool scool yeah skull smurf eyes scool yeah yeah smurf cool eyes nono skull yeah scool :-)

Post Edited By Moderator (Ides) : 7/12/2008 9:11:41 PM (GMT-6)


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 7/12/2008 5:45 PM (GMT -7)   
welcome to the forum! I'm glad you were finally able to be diagnosed. I'm sure your experience will be an asset to the forum. :-)
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, and in the process of being diagnosed with crohns. Too many meds to list!


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 7/12/2008 7:59 PM (GMT -7)   
Welcome! My story is similar to yours. It was 10 years before I was diagnosed. In the beginning I had doctors that would say nothing is wrong with me. to it's a flu (that's one long flu!). To it was something I must be eating/drinking. To it is stress caused. It was always that I was too young for anything more serious. Finally I started getting the IBS diagnosis. I lost my gallbladder in 2001, it was very inflammed! Then in 2003 I got a rectal abscess and then fistula. I was also told that sometimes it's just something people get. Sure! Funny I've yet to meet anyone that has had a fistula that didn't have Crohn's!

It took me landing in the hospital with a GI bleed, and almost dying to get diagnosed. I'm now looking for a new GI again though, because the one that diagnosed me is awful too. Hard to find a good GI I'm finding!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 5 mg *eek*, Asacol, Questran, Toprol XL (for high blood pressure).


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 7/12/2008 8:07 PM (GMT -7)   
Welcome. Just some thoughts:

- some people feel better on a celiac diet since we have food sensitivities, so it was not necessarily in your head. If you felt better on that diet you might want to consider trying it again to feel even better.

- 5mg of Klonipin is an awful lot.

- if you are feeling better have you considered talking to your dr about reducing the Entocort? Not the best thing to take long term and you have side effects from it...
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 20mg prednisone.  Udo's Choice Probiotics (30 billion).


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 7/12/2008 8:18 PM (GMT -7)   
Welcome to Healing Well, Hayride! I'm sorry that you had such a long and difficult time getting a diagnosis. Unfortunately your story is not that uncommon. I went over 25 years before I was diagnosed. There was a period of about 20 years where I just sucked it up because I had been told so often that I was "stressed" and that was causing my bowel issues.

I removed the name of the doctor that treated you so poorly. While it would be nice to warn others away from him, our forum rules prevent us from posting such comments. I am really glad that you decided to join us here. I hope you find our community as welcoming as I did when I first joined.
~~Ides
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/13/2008 7:51 AM (GMT -7)   
Welcome, Hayride. I love your ID. Sure am sorry to hear the difficult time you've had! But, isn't that Kombucha drink the stuff made from the mushroom set in water and allowed to ... "develop"?? There have been more than one TV and news article about how "dangerous" that "tea" can be if this is the same. I sure wouldn't want to take it w/an inflammed, possibly ulcerated, intestine! Assuming it is one and the same.

Yep, there are some real sorry excuses for doctors out there. I call them educated idiots. And I detest those chauvinistic sheisters who immediately decide any woman's complaints are minor or all in their imagination yet sympathize immediately w/any male patient despite how minor their complaint.

There ARE good doctors AND good gastros out there. I know they can be hard to find and it can take months to get an appointment only to find this isn't the doctor or gastro for you. I went thru the doctor shopping bit at the heighth of an illness twice when my family doctors died. One from a brain aneurysm and one from a malignant brain tumor. What an education doctor shoppng can be!!

May you quickly find a good gastro and encounter remission fast!!!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

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