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I found out I have very bad inflammation of my colon

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Posted 12/16/2012 2:30 AM (GMT 0)

I had a colonoscopy done on tuesday. I have an endoscopy on 12-27. I have had diarrhea problems all my life but For over four years, I have been in and out of the dr's offices trying to find out why I have chronic diarrhea, along with nausea and vomiting. I have bleeding down there and I am anemic. I lose my appetite then regain it for a week, then I lose it again for months. I am waiting for the biopsy results but he told me my colon is very badly inflamed. What does this mean for me? Will a possible colectomy be in store for me? I have been going through this for years and I'm ready to know why. If a colectomy is in store for me, how should I prepare for it and what should I expect?

Posted 12/16/2012 2:32 AM (GMT 0)
I have bad abdominal pain as well and it really hurts to go.
Posted 12/16/2012 5:33 AM (GMT 0)
You probably have ulcerative colitis. There is medication to treat it Nd if that doesn't work then consider surgery. I can't see how any doctor couldn't work out what's wrong with you
Posted 12/16/2012 7:06 AM (GMT 0)
I hope your doctor explained the colonoscopy and endoscopy are to determine whether you have Crohn's, colitis or another condition. The biopsies usually confirm what the doctor already visually diagnosed from the scopes.

Once you have a diagnosis, the doctor will put together a plan A of treatment, a plan B, etc. Many people with inflamed colons are able to go into remission with medications. I had a 10 year remission followed by a 5 year remission. It will take a few experiments before you develop a treatment that works for you. There is a progression of drugs from the simplest to the most complex that you may end up going through over the years.

This means that your life should get a lot better once you are diagnosed and have a treatment plan in place. The likelihood that you would need surgery this soon would be rare but not unheard of. There are many advantages to having an ostomy so please do not be afraid of the surgery. I have a j-pouch but if I had to go back to an ostomy I would not be too upset. The more you can educate yourself about your options, the more comfortable you will feel about your choices.

Have you been put on prescriptions? You may want to look at both the Crohn's and Colitis boards to read some of the successful and unsuccessful treatment stories. There is one wonderful poster who always recommends treating from both ends via oral and rectal meds. Her posts are wise and funny. Keep in mind that the people who are in remission rarely post on internet support sites so you will see posts skewed towards people who are experiencing problems. I found that knowing what problems could lie ahead helped me understand and support most of my doctor's decisions and to challenge him/her when I needed to have a different treatment.

I cannot tell your age but if you are young you will find lots of other people going through exactly what you are going through. There are often good discussions on how to deal with our diseases in social situations, dating, school, college, partying, sex, etc. There are no taboo subjects and all questions are open for discussion.

I hope we can help and support you. Many virtual hugs,
Szm
Posted 12/16/2012 8:57 PM (GMT 0)
SZM gives a lot of good advice. It sounds like you have UC or Crohn's colitis. Hopefully you'll get on some meds that work and start getting some relief soon. Definitely check out the other boards. Hope you get some answers soon.
Posted 12/18/2012 6:26 AM (GMT 0)
If you are anemic this most likely means u have Ulcerative Colitis! Once you are diagnosed there is hundreds of options. They say you are supposed to get a colon surgery withinn10 years to prevent colon cancer. There are bloodntests ghat can tell you if you are at risk for cancer. Them you might nit have to
Posted 12/18/2012 6:53 AM (GMT 0)
kkcoolk44,

"They say you are supposed to get a colon surgery within 10 years to prevent colon cancer."
I do not know where you found that information but it simply is not true. I double-checked with my colorectal surgeon today. He requested that I post that if you have a healthy colon even with ulcerative colitis he would not recommend preventive removal unless you have a high risk of colon cancer due to family history and confirmation of that through genetic testing. He would prefer that you also have biopsies showing precancerous growths.

The genetic screening tests for colon cancer are very useful if you or your family has a history of Lynch syndrome, familial adenomatous polyposis (FAP), hereditary nonpolyposis colorectal cancer (HNPCC) or any other types of colon cancer. The tests are not usually covered by insurance and results could be used by an employer or insurance company to discriminate against an individual. I was bumped up to the high risk insurance pool because of my cancer risk in 2007 and my risk factor was bumped up again in 2011 after having a perforated colon.

The Genetic Information Nondiscrimination Act of 2008 was passed to protect against the improper use of genetic information in health insurance and employment but I do not have a lot of faith in it. Adherence to the non-discrimination laws seems to be more of a state-by-state issue in the US. I am still in the high risk insurance pool and have to pay a lot extra for insurance through my husband's employer. We pay $1822 a month just for health insurance.

If you do not have a high risk for colon cancer, I would not recommend being tested unless it is to confirm a doctor's diagnosis.
Posted 12/18/2012 12:41 PM (GMT 0)
Agree, with SZM, be careful w/that advice kkcool. Also, I was anemic all the time w/Crohn's colitis, which can look a lot like UC.
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