Newly diagnosed

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lol?
Regular Member


Date Joined Mar 2009
Total Posts : 53
   Posted 3/23/2009 6:49 PM (GMT -6)   
I was diagnosed with Ulcerative Colitis on February 27th, 2009 via Colonoscopy.  The procedure sucked since none of the sedative would work on me.  Even the doctor said they gave me the maximum amount and I was still awake and chatting with the nurses.
 
Anyways, I just recently had my follow-up appointment, and he said his diagnosis at the time of the Colonoscopy is similar to the diagnosis via biopsy - severe colitis (which is just Ulcerative Colitis); then he showed me these pictures of my colon.  I saw some very nice areas, and then areas of, what almost appeared to be canker sores, with blood pooling up.  Quite appalling.
 
Anyways, on the 27th of February, I got two prescriptions - one for Lialda 1.2GM and Mesalamine enemas.  The former I have taken consistently, the latter, however, due to insurance, had to be changed to hydrocortisone enemas that do not seem nearly as effective as the Mesalamine (Rowasa) enemas were.  I have met my deductible on my insurance, and am now able to take Mesalamine again, and the doctor highly recommended me going back to that.
 
I am amazed at how quickly I became symptomatic.  Literally one week I was fine, and the next I was having mucus, then the next came blood and going numerous times per day.  I had no abdominal discomfort, but the anxiety of the problem was almost too much to handle.  Then having to wait a month for the Colonoscopy was almost morally defeating.  I was convinced I had cancer, albeit I am 27 years old and it doesn't run in my family.
 
Now on to some questions for the folks who have a lot of experience with this dastardly disease.  Does anyone find alcohol and/or coffee irritating the symptoms more?  How long before this Lialda and enemas start to work and I begin going back to normal again?  The bleeding has reduced tremendously, as has the amount of times per day I go, but I am still not even 60% to my regular regime yet, and it's been a month (perhaps I'm being too optimistic on the time it takes to begin to heal?).  And lastly, what can I do to keep it under control food-wise?
 
By the way, the doctor said that years of constipation could increase the chance of IBD, and that's what I had due to my Hypothyroidism (currently medicated since 16 years of age).  My bowel movements have NEVER been the way they should, and my Endocrinologist told me that's to be expected with a thyroid disorder (lame).
 
No one around me has this disease except my father, and he has only had 2 episodes in his life and none have required medicinal intervention.  I just want to interact with some people who can relate to me, the age at which I was diagnosed, and shedding some insightful and helpful light on the entire diagnosis.
 
Thank you.

Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 3/24/2009 12:26 AM (GMT -6)   
lol?
That's a bummer about the sedative not working. I've heard it can vary - but in FL, the GI Doc puts us out!
I wake up from my annual Coloscopy like I just had a good nap. It's much better anesteshia than when i was first diagnosed a bit more than 10 years ago, that old stuff left me groggy for hours.
I'm pretty certain all would agree - if you end up with only a couple of episodes like your Dad...consider yourself extremly fortunate! I have a young friend with a sililar story - one terrible episode two years ago, put in the hospital, was given a series of pred and treatment drugs - and he's never had another flair up, no maintainence meds even.
Just reading some of these posts will give an idea what UC can be like. As far as Drinking - my drinks were Beer & Wine and Vodka Martini on occassions - I have tapered down to zero - after a few major flair-ups it's not worth the risk...I'd stick my neck out and suggest that Alcohol is not in any way helpful if your UC is remotely active at all. Will I go back after I achieve complete remission? Probably in moderation, but since I'm in a current flair-up...the thought of drinking any alcohol right now grosses me out.
Wishing you the best results!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30993
   Posted 3/24/2009 2:26 AM (GMT -6)   
Hi..welcome to the forum!

If you weren't in pain during the c-scope, that's still good. . I request to not be put under because I like to watch the monitor. My doc did remind me that the amount he uses usually knocks out the rest of his patients. I think I fight it too to make sure I see what's going on. I did fall asleep during the last one for a while...and was ticked about it.

Regarding your diagnosis...by severe, do you mean throughout your colon or limited, and the area that's affected is severe? If limited...up to where exactly?

Many of us don't recognise very mild inflammation and some of us don't show symptoms as to the amount or severity of the inflammation. I agree with the surprise of how fast symptoms hit..but it's not usually that fast unless there's a pathogen or meds to cause severe inflammation initially.

I'd suggest not to drink excessively...everything in moderation, especially since our liver can be affected by UC and the meds we use. Nice to keep it as healty as possible.
The affect it would have on the colon, to me is less of a concern to me.
No, I don't "drink", only an ounce a few times a year of wine.

It's great you're on oral/rectal 5-ASA meds...have you noticed a vast improvement?
it takes time for it all to get figured out.

quincy
*Heather* Status..Asacol  (3 x2 daily); Salofalk enemas nightly for flares, tapered to maintenance  mild flare nightly enemas
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


lol?
Regular Member


Date Joined Mar 2009
Total Posts : 53
   Posted 3/25/2009 7:08 PM (GMT -6)   
Hey, guys. Thanks for the warm welcome and words of encouragement.

I did not ask what part of the colon was directly affected; however, the blood I passed was bright red, if that's any indication of its location. When I looked at the photographs, and watched the scope on the monitor, I do recall a larger majority of the colon being clean (then again, I'm not a doctor of medicine), but I do remember a number of patches that showed much inflammation and the active colitis.

The oral and rectal meds have significantly reduced bleeding, which was constant before, but not constant enough to cause me to be anemic. I rarely get bleeding now, and if I do, it's very light (I'm only a month into the diagnosis and treatment).

I assume it may take a while for things to normalize again? My blood tests are all normal and stool samples show no parasites, malabsorption, etc.

As far as the quickness of symptoms - my doctor didn't seem too shocked by it.  about a year ago, I had a week where I passed normal stool, but a lot of white mucus was included with it. After a week it went away. Then this year it started doing the same thing. No big deal, I thought; it will go away like last time. Wrong! The next week I was frequently going to the bathroom with small (in amount) bowel movements and the week after I started to pass blood with the frequent and small bowel movements.

I am thinking it may be on the left-side because I have had an intermittent dull ache in my lower left quadrant of my abdomen that lasted about a month a few years back. A CT scan showed no abnormalities and blood tests were normal then, too. The pain subsided, but my doctor said if they didn't, he would be issuing a colonoscopy.

What I meant by "severe" is this - the doctor said the biopsy read "severe colitis," which he said translates to Ulcerative Colitis. Not severe Ulcerative Colitis because he said mine is borderline mild/moderate.

Thanks guys for anymore light you can shed!

Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 3/25/2009 10:42 PM (GMT -6)   
This is one insideous disease - symptoms and flair-ups vary from patient to patient.
My symptoms started opposite of yours. They were so simple and sporatic - that I thought; no big deal. A little cramping - a bit of blood (that's what sent me to the doc 11 years ago) then boom! My ignoring my GI's orders for regular Asacol and suppositiries sent me into my first major flair-up. My hemoglobin dropped to 1/2 the normal count; my wife would find me in the tub at 3 or 4 AM - trying to sooth my extreme cramps, and I was one step from being hospitalized. Fast-forward - I went about 3 straight years recently with only the mildest of flair-ups - when I was introduced to Immuron. I tolerated it well - and never felt better - ate and drank anything, (even got a bit chubby) Recently the Immuron quit working - and I've had about a 3 month long flair up - a moderate one. Now the Doc has me on CIMZIA. Point I'm making - at this stage, stay firm with your Docs suggestions - identify your 'triggers';
Alcohol, Coffee. Sweets...and stear clear of those.

Most importantly, if you aren't absolutely crazy about your GI doc - search! I went to several - now I'm comforable - he's a well respected, long time Board Certified Surgeaon too.
So hang in there - also - lot's of good info on this site!
Take care & stay on your meds like it's your religion!

Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 3/25/2009 10:56 PM (GMT -6)   
Hey, I was recently diagnosed as well (March 6 2009). I'm 21. I've been getting symptoms for the past two years but I was misdiagnosed with gastroenteritis and (the first time) antibiotic-associated colitis. I'm taking mesalamine/asacol and prednisone. The prednisone is a taper and I'll be staying on the asacol as a maintenance drug. My last flare-up was horrible for me, it started around mid-terms and I got the flu at the same time, then it started getting worse to the point where right before my colonoscopy I could barely find the energy to walk to my classes.

Alcohol and caff do seem to make me feel worse-drinking alcohol causes me stomach pains and painful bowel movements the next morning and caff acts as a laxative for me. It really sucks, since I'm a student caffeine was practically a way of life for me and a lot of the social life here consists of going to bars/getting wasted.

Also, my first time (when they diagnosed me with antibiotic-associated colitis) I got a flex-sig done with no anathesia, so I feel your pain.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/25/2009 11:00 PM (GMT -6)   
My current GI knew what to give me to knock me completely out (sorry I can't remember what he used) it was the first time I ever woke up not balling my eyes out and all dazed and confused about why I was balling, in the past during colonoscopies I was also accused of swearing and yelling along with crying so I think it's a matter of them giving you the right stuff, some people are harder to completely knock out compared to others...I've always had to get quite a bit of extra freezing for dental work too.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


lol?
Regular Member


Date Joined Mar 2009
Total Posts : 53
   Posted 3/26/2009 2:33 AM (GMT -6)   
I'm very pleased with my GI. Very friendly guy, board certified and has actually called me on my cell phone personally to make sure things are going better. I am someone who has a TON of anxiety over doctors so having him as my doctor is a major relief. I am truly lucky with him.

It's ironic about the alcohol because this huge ordeal started about a week after a rather large weekend binge with friends at my apartment. We basically barhopped for my friend's 27th bday for 2 nights and I never felt right after that. Perhaps that was the straw that broke the camel's back?

I am not a big drinker. Usually I drink a few times per month, and nothing like that weekend. A few times a year I will get way too gung-ho and drink way more than I should, however.

It's just discerning that I have Hypothyroidism and now Ulcerative Colitis...both of which are defined as "chronic conditions." At my age I don't think I should be having any health problems when I take relatively good care of myself.

My GI said I will have to have another colonoscopy in about 4 years, then 10 years after that, then every 1-2 years after that (or something along those lines). That will put me at about 40 years of age for my 10 year follow-up. I just remember a 10 year interval, then every 1-2 years. This sound about right? I know this increases my risk for colorectal cancer so I have no problems with the test.

The coffee comment is almost heartbreaking, heh. I don't know how I'd manage at the office without coffee.

Thanks a bunch, guys. You're all being very helpful here with my new diagnosis!

Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 3/26/2009 6:38 AM (GMT -6)   
Hi there

I dont have any family history either....but I do have the gene (see below) ..my mother also has it.....

Coffee seems to go straight through me ..I think everyone is different when it comes to food
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline

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