What is life like for people prior to being diagnosed with Ulcerative Colitis?

The answer is just as you would expect.  Life is different for every person.  Of course there are many things that are the same on the medical side.  Some of the most common signs that a person may have Ulcerative Colitis are that they tend to use the bathroom more frequently than other “normal” people who do not have Ulcerative Colitis.  People who are un-diagnosed are simply that, Un-Diagnosed.

How Long can a person deal with Ulcerative Colitis before being diagnosed?

Days, months, years, a lifetime.  Anything is possible.  I probably could have been diagnosed 5 years prior to my big day of October 2, 2008, but that is not what happened.  Some people may go much longer or shorter, it all depends on you.

Since Ulcerative Colitis is a disease that effects how you poop and use the bathroom, it is not something that people commonly talk about.  Come on, that is not pleasant talk around the dinner table.  Also, Ulcerative Colitis has many different degrees of severity.  It can and usually starts as a very mild disease which has the ability to slowly progress and become worse.  If you are un-diagnosed, you run the risk of allowing the disease to make you forget about what normal bathroom visits were like in the first place.

Think of this as an example.  Take today, and think of the average amount of time you spend doing #2 in the bathroom.  Now if you just add 2 seconds each day to your normal #2 bathroom visit, that would seem like no big deal at all.
If you spend 4 minutes doing that today, and add 2 extra seconds for each day moving forward, two months from now, you would be spending 6 minutes in the bathroom.  My guess is that you would not even notice that.(I sure didn’t)

But one year down the road you may be spending 15 minutes in the bathroom for something that used to take 4 minutes…

My point is that its very easy to live with the disease when it is un-diagnosed.  I did that for many years of my life.  Since the disease also becomes more and less severe from time to time, it allows your mind to think things are getting better and no action needs to be taken.  WRONG!

Action for sure needs to be taken, the sooner the better.

Should I be having a Colonoscopy?

I put a post up which is an exact dictation from my Urgent Care Visit from 5 days before my colonoscopy, Urgent Care Visit

– Feeling like you can’t leave home without your toilet
– Using the toilet for #2 more than 4-5 times a day for many days in a row(sometimes the frequency may be 2-3 times, the next day it may be 4-5 times, then back to 2-3 then to 5-7 etc…)  There is no exact story on how this disease creeps up on people, it is different for everyone.
– Abdominal pain that is not really ever relieved, but using the bathroom is something that seems to make things somewhat better
– Loose stools, anywhere from VERY loose, to only semi-loose…
– Any type of constant bleeding in the stool, that should be a pretty clear sign that something is not working perfectly…(don’t start fooling yourself to believe that blood in the toilet bowl is normal because it surely is not.)
– If these symptoms start to make you tired and light headed, well get on down to the doctor’s office and tell him/her the story right away
– If any of the above are happening, and you also have a family history of UC or another Inflamatory Bowel Disease, get on down to the Colonoscopy Center ASAP
– If for any reason you start to realize that using the toilet is a half hour long procedure, when it used to take you only minutes, and you are having some of the items listed above, get on down and get it checked out!

What is the Colonoscopy All About Anyways?

The Colonoscopy is something that normally allows a doctor to get a bird’s eye view of what is happening from the inside of your bowels.  Imagine a very tiny camera being pushed up into your butt-hole and looking at the footage on a T.V. screen.  Well, that is very similar to what the doctor is looking at during a Colonoscopy.  Most of the time, patients are out cold(asleep from medicine) during a colonoscopy.  In some foreign countries like the Czech Republic for example, the colonoscopy is done without putting the patient to sleep(eeewww).

Most people have no recollection of the actual Colonoscopy at all due to the medication you are put on, and most people wake up in the waiting room afterwards and realize they can’t remember it at all.  Luckily, the doctors usually take several photographs so you can see what the colon looked like, and in many cases, the doctors will also take biopsies as well.(The biopsies are very small samples of your colon that are obtained by taking a tiny piece out of the colon wall during the colonoscopy procedure.  They do this so a pathologist can review the biopsy to determine if there is something unusual going on(cancer etc…)

At the end of the day, the colonoscopy is a great thing.(yeah, you do need to drink quite a bit of nasty stuff to clean your system out before, but its not the end of the world)  It allows you and your family and a doctor to see exactly what the inside of you looks like.  My favorite part is that the pictures that are taken are yours forever.  You can use these to reference at a later date, and when you have a colonoscopy again, you can look at the new pictures and compare them.  If you are like me, you will see that it surely is possible that your colon can easily make it back from feeling bad to feeling good and working properly once again.

Some tips from my experiences on having a colonoscopy:

ask your family and friends who they recommend for performing the colonoscopy

make sure to get two copies of the report and any pictures from the colonoscopy

make sure to tell the doctor before he performs the colonoscopy that you would like him to take as many pictures as possible for your records

make sure to have someone from your family there with you, you probably won’t be able to drive home because the drugs that you take make you go to sleep, they are pretty powerful, and they wear off over some time.

**another good resource on info about colonoscopies is here:  Dede’s site

Recently Diagnosed:

What is life like after you have just been diagnosed with Ulcerative Colitis?

CRAPPY,  well, the answer is going to be different for everyone. The bad news is Ulcerative Colitis is a disease, it is not like the flu where you have it for a few days and that is it. Ulcerative colitis usually has been with people for a while before it is diagnosed, and it remains forever. The good news is that there are all kinds of ways for people to treat Ulcerative Colitis, and it is not the end of the world. As my uncle told me over and over again, this is serious but not fatal.

One of the memories that most people who have ulcerative colitis remember is the day they were diagnosed. As you may have read in the preceding page, this is something that is typically diagnosed after having a colonoscopy. You may very well be recuperating in the waiting room, and coming off your anesthesia when the doctor comes in with a piece of paper. This is how the events unfolded for me. Although I was very drowsy, I can definitely remember sitting there with my wife and mother and hearing the clear words that it was “Ulcerative Colitis”. My guess is that, if you are like most people, it probably won’t sink in that this is really happening for some time. The next thing I remember was getting in a car and heading off to the drug store. Things were very fuzzy and I had no idea at all of exactly how long the actual colonoscopy was(did it take ten minutes, and hour, two hours etc…)

Again, let us review one main point here. Ulcerative Colitis is serious, but it is definitely not fatal.

October 2, 2008 was the day for me. A gastroenterologist did the procedure. This happened at the Palo Alto Colonoscopy Center next to Stanford Hospital.

After leaving the building with a brand new shinny prescription for a big bottle of Asacol, my wife and I headed to the pharmacy and to a local restaurant to grab some lunch. Yeah, I was still feeling a bit out of wack from the medications. In speaking with several other people who have UC, it seems that Asacol is a very common first step on the medication side from physicians these days. Wow, when the pharmacy called back to say it was ready it was amazing to be picking up such a huge bottle of pills. I never picked up so many pills before in my life, 270 pills to be exact. I was to take 9 pills per day, 3 pills 3 times daily to be exact. These pills were not tiny either, they were some big huge horse pills if you asked me. After looking over the cost for this Asacol, it was near $400, and I was happy to have insurance, believe me…

“Doctor, what should I be eating”

One of the first phone calls I made after being diagnosed was to the gastro doctor. I was getting very worried about what to be putting in my system. It was very clear that my bowel movements were nothing like a normal person, but more to the point, there was extreme blood, and I didn’t know what to put in my stomach anymore.

The nurse at the doctor’s office told me to stick with eating breads, bananas, rice, pasta, apple-sauce, soups, broth, chicken, no red meats etc…

So, I did what I was told. I ate quite a bit of bread, Gatorade all the time, and eggs.
All along, I kept on asking the different doctors I met with what their thoughts on diet were. Surprisingly, most of them said that diet does not have anything to do with the disease. Many doctors said I could eat whatever I wanted to eat. Others said things like bread, poultry, limited alcohol, no red meat. Although it would seem that diet would be very important because all of the problems and inflammation were in the intestines, doctors did not seem to concerned with what I ate. That was always a bit strange.

A week went on, things got worse

A week after having the colonoscopy and being diagnosed, my symptoms kept on becoming worse and more severe. At this point, I had been off work for a week, and was not having an easy time functioning. Sitting in bed was usually difficult to do without feeling cramps, aching and pains. There really wasn’t much I was excited about at this point. So, the week follow up with the doctor came and went. I explained how things were not any different with the Asacol, and I was wondering if they were doing anything at all. He decided to write me another prescription for Prednisone. This was to start out at 30 mg per day.

As you might guess, after leaving that office, it was off to the pharmacy once again to fill another prescription. At this point, I was definitely not used to going to pharmacies and filling orders, but as it would turn out, that would become the norm over the next year. Once the prednisone(steroids) were filled and in my hands, I popped them walking out to the car. I was excited to be taking an additional drug, with the hope that it would get me better.

After a few hours, everything changed. I felt completely better. I remember telling my wife, wow these things are great. I remember taking some more later on that night and being so excited.

As you may already have guessed, that was very short lived. The steroid high wore off within about a day, and the reality sank in that the Prednisone was not the cure all. The prednisone did do quite a few other things though. Most notably was its ability to keep me up all hours of the night. I was finding myself looking at my wife lying in bed at 3am all the way to 6am while I would be browsing the Internet. As my dose of prednisone increased to 60mg per day, the all nighters became even more frequent.

Steroids help many people with Ulcerative Colitis

Just because prednisone and Asacol did not calm down the inflammation of my Ulcerative Colits does not mean those drugs are not capable of doing just that. In fact, there are stories that the desired outcome has happened with many many people around the world. Treatment of Ulcerative Colitis with medications is something that is somewhat of a guessing game. Asacol may work for some people, but not for others. Prednisone may work for your uncle but not for you. Rawasa may be your savior but won’t work for anybody else in your town. It is one of those things in life that has no definite answers. Medications are just that….medications. They are called medications and not “cures” for a reason. In my case, the medications were not working a week after my colonscopy, a month after, two months after etc…

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3 thoughts on “Diagnosis”

  1. This all sounds very familiar, I have just been in hospital as my problems got more severe, I am now out of hospital and I have to continue taking Asacol orally and a sippository, this is fine, however they out me on Prednisolone and I have to take 40g for six days then 35g for seven days and so on until I stop taking my course but I have read up on this drug and I’m not sure if I want to be taking this, everything I read is really negative, especially the side effects when coming off the drug, it seems clear that it does help but can cause a lot of problems. Should I be taking this?

    1. Hey Robert,

      I’m sorry to hear things are not going well for you at the moment. That is going to change though. Great first step on getting out of the hospital.
      As for prednisone, you are correct. It is a great medications for helping to stop symptoms associated with UC, however it is also known as the big bad wolf in terms of nasty side effects that can often really tick of a UC’er who is in recovery from a flare.

      The ultimate decision to take or not take is one that you need to make along with the help of your doctor. One thing that is FOR SURE, is if you ever consider stopping the Prednisone, YOU MUST consult with your doctor BEFORE doing that. Otherwise, there are some nasty complications that may arise if you stop taking prednisone cold turkey.

      On the super bright side, the side effects of prednisone use when used as a temporary aid to fighting UC generally go away very quickly once you stop the course and are through with the recommended taper.


  2. I was in the hospital for 10 days because of UC and c-diff.
    When I had a flexible sigmoidoscopy (partial colonoscopy)
    they did a biopsy and found Cytomegalovirus (CMV).
    My thoughts are that both C-diff and CMV made my UC worse
    and probably started first.
    I highly recommend that UC folks who have a sigmoidoscopy or colonoscopy
    also get a biopsy to verify no CMV!!! Note:CMV only showed up because of
    the biopsy in my case.

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