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Old 08-15-2008, 06:23 PM   #1
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Question does anyone have Colitis????

Hi last year I had every test done unver the sun because I get diarrhea 3 or 4 times a week.I wont list all the test because I had them all done all of them.But at the end of all the tests the doctor told me I have inflamed intestines and thats all he said and told me to keep taking imodium .But from everything I look up on the internet if I type inflamed intestines it leads me right back to Colitis.Does anyone here have Colitis at all and if so can you tell me what your sysmptoms are.Im going back to talk with my gastro doc but It takes months to get in so any imput from anyone that has colitis would be helpfull.I just dont understand my gastros diagnosis at all inflamed intestines .shouldnt he have told me a little more.Is it possible to have inflamed intestines without having colitis?

Last edited by ctbo; 08-15-2008 at 06:38 PM.

 
Old 08-30-2008, 06:06 PM   #2
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Re: does anyone have Colitis????

[QUOTE REMOVED]

Hey Ctbo,

I have colitis! Before I started taking meds for it I was going multiple times during the day, so much that I had to keep medicated wipes with me to keep my shoot from burning constantly! I think the worst was when I would start to get sick because my stomach would start to churn and I would keel over in pain. Other random things that happened were things like I would get headaches from the pain or my back would hurt really bad. Umm I was loosing so any vitamins in my system that my eyes would burn (loss of potassium) before I would get sick or really dizzy right before...

BUT, what I would suggest is to get a second opinion. Yes you can have intestinal swelling. That could come from going so much. Did they at least say to watch what you eat??

I've kept a diary of what I eat and noticed all of the things that make me sick. Like for example... NO STEAK!-- o my goodness. If I eat steak I'm in pain within 10 minutes! It's the worst!

Oh did they say it was your intestines because if it's your upper intestines it could be Crohn's disease which I've been told is sometimes confused with Colitis... but maybe if your lucky you just have IBS!

Well I wish you the best of luck in your future gastro visits, If you have any questions.. you can ask.. I'm only 23 and I've had I think just about everything done too! And I've taken just about all the meds available for colitis!

Talk to ya later!

Last edited by moderator4; 08-30-2008 at 11:00 PM. Reason: Quote is unnecessary.

 
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Old 09-05-2008, 04:12 AM   #3
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Re: does anyone have Colitis????

For those who have been diagnosed with colitis, or have diarrhea constantly with no diagnosis, I have been suffering with this for over 4 years. Gotten worse in the last year, as I lost my husband after years of sickness. The stress made the colitis worse, of course. Like most of you, I tried every medicine that my gastro doctor could think of. He finally had to refer me to MUSC in Charleston, SC (medical university) as he was stumped as to what to do next. I have lost 30+ pounds in the last year, and regardless what I eat, I cannot gain any weight back. After having 3 colonscopies and endoscopies, the diagnosis was microscopic colitis. The two gastroenterologists finally decided conservative measures were not working, so they decided to get aggressive. I was placed on a chemo drug used for leukemia patients. It's called Mercaptopurine. It has helped me significantly as instead of have chronic diarrhea 10-12 times per day, I'm down to an average of 7. To me, that's very significant. I still have the diarrhea, however. If this medication does not work, then they will do infusion therapy. I'm not sure what that involves. The last resort would be surgery. I simply cannot afford to have surgery at this point in my life (58) as I have no one to care for me at home. So I hope the gastro doctors are satisfied with the results of the mercaptopurine. However, it does cause side effects just like any chemo drug would. You don't have the entire baldness, but there is a thinning of the hair. If it helps me, though, I don't care. So if your doctor has tried all the other medications, i.e., Endocort, etc., you might want to ask him/ her about the mercaptorune.

 
Old 09-05-2008, 07:25 PM   #4
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Re: does anyone have Colitis????

My wife has Microscopic Colitis and it first surfaced two years ago. She was vomitting and had diarrhea at the same time for over two months. She got over it, but her father passed away last March and she had a flare-up that she is just getting over. I was wondering, you mentioned Endocort, but did your doctors try Prednisone? That's what my wife's GI Doc finally used with her. They started at 40 mg for a month and then weaned her off of it by 10 mgs per week, down to 10 mg and then she went to 5 and then off the next week.

I have IBS myself, which is very similar and some say it is actually a form of Colitis. When mine flared up 10 or 11 years ago and I had diarrhea 10 times or more per day, they tried every drug in the books to slow mine down. Due to the associated pain with it, my doctors finally put me on Hydrocodone to slow the gut and help with the pain. It worked and I am still on the pain meds, although different ones today.
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Old 10-29-2008, 08:55 AM   #5
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Exclamation Re: does anyone have Colitis????

Quote:
Originally Posted by ctbo View Post
Hi last year I had every test done unver the sun because I get diarrhea 3 or 4 times a week.I wont list all the test because I had them all done all of them.But at the end of all the tests the doctor told me I have inflamed intestines and thats all he said and told me to keep taking imodium .But from everything I look up on the internet if I type inflamed intestines it leads me right back to Colitis.Does anyone here have Colitis at all and if so can you tell me what your sysmptoms are.Im going back to talk with my gastro doc but It takes months to get in so any imput from anyone that has colitis would be helpfull.I just dont understand my gastros diagnosis at all inflamed intestines .shouldnt he have told me a little more.Is it possible to have inflamed intestines without having colitis?


That is the same here. Ive been sick for past two months and found out three weeks ago (after going to 7 drs, 2 diff hospitals...who didnt know what was wrong) by going to a dr out of town. he told me the exact same thing. the inflamed intestines. I searched on the internet and found colitis. I have been told there were diff kinds of colitis...which when i go back to the dr, I will ask him. I wish they were more detailed. To answer your question, everytime I search for the defination for colitis...its when the the intestines are inflamed. but like i said..there are diff kinds of colitis.
my symphtoms....i would have diareha bout once every week at least. I couldnt hold down anything. I had real bad abodmen pain. Sinus really bad. And really really bad migranes. The dr at first, told me not to eat anything but protein drinks. for almost two weeks thats all i had. then he put me on just mashed potatoes. and im going on my 2nd week of just mashed potatoes. and im still having pain.
lemme know what he says. what kind of symptoms do u have?

 
Old 10-30-2008, 05:50 AM   #6
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Re: does anyone have Colitis????

I had ulceritive colitis. After not responding to my meds i was sent down the path of this stuff called probiomax. It took three weeks for all symptoms to disappear. I don't know for sure if it will have the same effect for you as it did for me but you gotta start somewhere. It's actually made for C. diff but it cleared me up without a recurrence for almost three years. So i recommend at least giving it a look.

 
Old 10-30-2008, 07:07 AM   #7
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Re: does anyone have Colitis????

I posted on this same subject in July 2008 as my doctor had tried another medicine for my microscopic colitis, which was mercaputurine. This is a chemo-type of drug used to treat leukemia, but some doctors had success using it with Chron's patients and UC patients. After being on it for two months, the side effects were worse than the chronic diarrhea I suffer from. Mouth sores, chronic fatigue, and the diarrhea went from 10-12 times per day to about 7-8 per day. That's not enough for me to stay on the medicine. So now I'm back to square one. My gastor doctor wants to send me back to MUSC for infusion therapy to help build up my immune system, but right at this time of the year, it's just not feasible. I'm dreading Nov. 11, as that is the day my husband died a year ago. Then the holidays are right behind that. So I told my gastor doctor that I have had this for 4 years, lost 30 pounds, but I could wait another 3-4 months until after the holidays. I just want to go somewhere to be by myself but my family is not going to hear of that. Anyway, try to talk to your doctor about WHAT kind of colitis you have, i.e., ulcerative colitis, microscopic colitis, or just plain colitis (is there such a thing)? Only your doctor can tell from sure. You'll probably have to start on numerous medications until you find one that works. I still haven't been able to find that magic pill yet. I have heard Prednisone works wonders for some people, but it did absolutely nothing for me. I have a friend who was actually diagnosed with celiac disease AND microscopic colitis. When she reached 88 lbs. the doctors knew it was getting to be life-threatening. Tried her on Prednisone for the colitis and it helped her 100%. She has "flareups" but not an everyday thing, like most of us have. Her celiac disease is under control with proper diet. On top of all that, her breast cancer spread to her liver and lungs, so she's really have all sorts of problems. My problems seem so insignificant when compared to hers. Keep your chin up and discuss this in detail with your doctor. It's a disgusting subject but it has to be done. Keep us posted. Good luck.

 
Old 11-18-2008, 09:47 PM   #8
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Re: does anyone have Colitis????

To NanaSharon:
I had Cronic Ulcerative Colitis back in the '70's. I got it soon after I got married. My husband turned into a Dr. Jekyl as soon as we got married. After our second son was born, I went with my sons to live without him, near my parents. ANYHOW....After having colitis for about seven years, having cramps and diahhrea all day long, I saw an article in Prevention magazine about a Dr. O. Carl Simonton who was an Oncologist (cancer doctor) who decided to use Immagery with his patients. He asked them to find a quiet place without distractions am, noon and pm and lay down and concentrate on where their cancer was and to immagine their white blood cells as little soldiers, and demand that they go to destroy the cancer cells. Well everyone seemed to improve rapidly. So in addition to that, I read articles in books about colitis and some experts suggested food allergies, especially milk and also stress. Well, I avoided milk and ate a better diet and started taking a Multi-B Vitamin with C and Iron and started the Imagery. Well within a week or two my COLITIS WENT AWAY!!! Hope you and others try this and go off the 'pills', too. But Prednizone....you have to wean yourself off. Talk to the doctor and ask him how slowly and try to avoid antibiotics and take Acidolphilis, too. Good luck.

 
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