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Crohn's Disease Forum

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Sep 25, 2011
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Hi Everyone!

I want to introduce myself. I begin my struggle in 2008 when I became sick on New Years Day with violent nausea and vomiting. It continued for 3 weeks before I finally couldn't keep anything down, including water. I was hospitalized through the Emergency Room where I was found to have an ulcer that perforated my stomach and was causing fluids to leak into my intestine. The pain was horrendous, worse than childbirth, I felt like I was dying. Come to find out due to the pain, I collapsed a lung and could have easily died either from the collapsed lung or from the possibility of sepsis due to the fluids leaking into my intestine. I was hospitalized for 6 days and sent home. No direct diagnosis was provided besides "ulcers" and told to follow up with my GI.

In 2010, I quit smoking in the summer because I was feeling very ill again. Actually let me back up....

2009, I began to develop very high fevers (102 degrees) and sores on my eyes and inside my mouth. These ulcers were very painful. My primary care doctor tested me for Lupus and Sjorgrens (which my mother has). Both test came back negative and I was referred to a dermatologist. No explanation was given for the fevers.

2010 I quit smoking because I gradually had become sicker and sicker. I began having horrible gas pains and diarrhea. The pains would be so bad I would double over in pain and break out in sweats. The SMELL was the worst, which no matter what I ate the odor was so malodorous I was embarrased to even leave the house due to the smells.

In April 2011, I was taken by ambulance to the ER and admitted for extreme inflammation. I saw a wonderful GI, Dr. Menasha (who I absolutely ADORE!) who identified the inflammation as possibly being UC. Upon further testing, I was diagnosed with Crohns. The final test they put me through was drinkng a Barium substance and having pictures (xrays) taken of it moving through my intestine. The test took about 4 hours and it was the worse.

I was put on Mercaptapurine, Pentasa, Prednisone, Flagyl.

I will however be starting acupunture, and herbal supplments. I cannot continue to take the meds, the side effects I get make me very very ill, including not being able to walk (prednisone) and the headaches that felt like I was having my brain sliced open with a dull knife. I also changed my diet and am working out every day.

Just wanted to introduce and tell my story. Thanks for listening and reading.
 
Hi and welcome to the forum! I am glad you found a great GI who was able to figure out what was going on with you. But I am sorry to hear you are suffering from a lot of side effects from the meds. Have your Crohn's symptoms improved at least?

Please be sure to speak with your GI before stopping any medication, especially the pred. You should not stop taking pred abruptly; you need to taper down in order to stop.

I hope you start feeling better soon!
 
HI Kenya, Welcome to the forum , Like jill said i am sorry you are suffering from crohns. But i wouldn't stop any medications especially predisone suddenly you need to taper from preds. As for medications i would speak to my GI specialists or GP first especially if there is any inflammation present it could make matters worse. best wishes.
 
Greetings and a most hearty welcome to you!

I totally understand wanting to discontinue the drugs. But as asked above, how are you feeling?

I'd discuss your thoughts with the doctor. I'm not saying this to try to convince you to change your mind, but maybe it could be a little more gradual. For example, if you're doing fantastic, the doctor might suggest just taking the Pentasa. At the very least, if you do stop everything, at least the doc could help with monitoring you going forward to catch anything in the early stages before it gets troublesome and you have to go on stronger drugs again.

Just my thoughts of course, I hope you stay apart of this community and keep us updated as to your progress :)
 
Thanks!

Hello all!

Thanks for the awesome words sorry I haven't had a chance to check this site I expected to not hear from anyone and now I have an email saying I had responses, so I'm happy about that!

In terms of my meds, I stopped taking them already, I did have to taper of the prednisone I found that out the hard way (I tried stopping once before and got very very sick). But I don't have insurance. The cost for the mercapturine and the pentasa alone is $963.00 per month, which I can't afford.

I'm currently trying to get disability, I will be quitting my job in February 2012. I have a wonderful fiance who...truly has been my backbone and seen my daily struggle. I'm out of work at least 1-2 days per week due to illness/stress and I am running out of FMLA time. I want to make it til the first of the year when I will have most of my debts paid off/down.

My doctor is familiar with my insurance issues. I mean, honestly there is nothing I CAN do, which is very very sad. I know without my meds I'm going to get sick, the cramps and diarrhea is back, my stomach is so swollen, I work out everyday and still look like I'm 4-5 months pregnant (easily and that, might I had is on good days).

So the acupunture I think might be good in conjunction with vitamins. Its more affordable and will treat my overall condition, I think.

I have an appointment with my GI next month. He's a wonderful doctor and I'm sure he will understand but I just can't afford the medication. And there is no aid available for someone like me (income too high).

I think I want to be on this forum for support and advice. You guys all seem very very nice and helpful,thanks again! :D
 
Hi & welcome. You might want to investigate Psillium for your diarrhea. Very cheap at about 20 US cents per day (Philippines). All natural powder. I have recently started using it and it has worked for me. Using the search tool in this forum, search for "Psillium" in the post headings to see a discussion on this.
 

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