Just diagnosed today....not happy

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Mad2
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/16/2008 8:24 PM (GMT -7)   
Hello everyone. I want to give a quick run down of how I came to this position today. The jist of it goes....

10 months ago I had blood in my stool (hard stool's). GI doc does a symodoscopy and finds hemmroids as the cause. He was able to go further then usual to really rule out anything else.

Puts me on Hydrocortisone suppositories and sends me on my way (to use as needed). 7 months later I sit down for a BM and a GLOB of mucus comes out. I had been constipated and figured my body was just over producing it to push it out. This goes on and off for about a week then stops. I had taken about 30 suppositories over course of that 7 month period and stopped when the mucus started.

2 months after the initial mucus episode it starts again. After I had used some suppositories I might add! This time it doesn't stop and for 2 months I pass GLOBS of mucus on and off throughout the day with and without stool. I called my GI and was told its probably just IBS and hard stool's. Well that wasnt' good enough for me so we scheduled a colonoscopy to really be sure.

2 weeks' before the colonoscopy I developed a new symptom. Right when I felt the urge to go to the bathroom I would get an intense "get this outta me" feeling. It would be a normal (hard) stool. And I had no pain once it was passed or urgency feeling.

Well to cut this shorter today I got my colonoscopy done and was diagnosed with "Suspect Moderate Ulcerative proctosigmoiditis". A biopsy was taken and I'll have the results next week of that. The doctor gave me a prescription of Asacol 3 pills 2 times a day.

Now I'm not a doctor. But I NEVER had any issues before using those suppositories. There is NO family history of chrons or colitis in my family. And I don't have bloody diarehea, loose stools or any pain. Maybe I'm in the beginning stages?? My doc says there is no connection between the UC and the suppositories but I just find that hard to believe.

I'm 26, eat very heatlhy (organic, lots of fruits and veggies), I take daily vitamins and omega 3's, I surf a few times a week and I'm very active in general.

So, other then lot's of mucus which is usually clear, brownish or sorta yellowish and that urgent feeling I get RIGHT before I go....I don't have any symptoms. Is this common? Am I gonna get worse? Will I have to have my colon removed at some point? :(

I'm beyond scared right now and I haven't been able to speak to my doc since I was sedated. Just want some opinions and thank you for reading!

Picton
New Member


Date Joined Jan 2008
Total Posts : 18
   Posted 1/16/2008 8:42 PM (GMT -7)   
Please don't be scared. Best thing you can do is read and become educated once you get the specifics of your diagnosis. It sounds like what you have going on is fairly mild, but regardless, life will go on.
Moderate pan-UC, diagnosed 12/07.
Asacol 4 x 3, Colocort nightly, probiotics, fish oil, vitamins.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/16/2008 8:54 PM (GMT -7)   
Mad2, I'm sorry to hear you needed to come here, but we do welcome you. While most people with UC tend to have diarrhea, some have constipation. The urgency you're feeling is caused by the inflammation in your rectum. Once the inflammation is cleared up, the urgency will go too. Hopefully the Asacol will do that for you. If not, there are other medications available, including enemas that can deliver the medication right to the affected area.

If you do in fact have UC, it's very likely that you won't need surgery. 67% of people with UC are managed medically. And while the condition can spread, many times it doesn't. It is important to keep taking your medication to help prevent it from getting worse. On the other hand, there are other things that can cause proctitis, so it's possible you don't even have UC.

It's very normal for you to be mad and scared right now. As Picton said, informing yourself is a good first step toward feeling like you once again have some control over your life. This is a good place to do that. Be sure to check the resources listed at the top of the board, there is a lot of good information there.

This is a great place to get information and support, so glad you found us.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


Mad2
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/16/2008 9:43 PM (GMT -7)   
Thank you for the responses! My doctor just called (Finally) and said while I do have colitis (he said that's just a big word for inflammation) he did do a biopsy to see if it's a infectious type. He said it is odd that I don't have the "runs" and that's why at first he told me he thought this was just IBS. In anycase he said what you guys just said. That its not "the norm" to have surgery done and that most cases are handled very well with just medication. He also added that he has seen some cases go into remission for over 10 years. Which gives a bit of hope if nothing else.

Thanks again. I would respond individually but I'm getting really tired. It's been a LONG day of laxatives for the colon prep and getting put under for the first time. Its awesome to have a place with other people who don't mind talking about such a gross subject!

Good night!

UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/17/2008 5:19 PM (GMT -7)   
Hey Mad. I echo what the others wrote, and wanted to add that like you I was doing everything "right," meaning eating well, exercising often, not smoking, no family history, etc... and here I am with it also. I think lots of us are in that position. what I have learned is to not try to rationalize it. the disease is what it is and we can't really make logical sense of it. but the good news is that yours sounds quite mild, so take a deep breath and try to relax and educate yourself once you feel less tired.
29/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 1/17/2008 9:59 PM (GMT -7)   
Hi..welcome to the forum. It's not clear yet as to what you actually have, and it seems you aren't officially diagnosed with UC.

Did the doc tell you exactly where your colitis is extended to? limited or throughout?

What meds are you on at this time?

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 1/18/2008 8:05 AM (GMT -7)   
Even though you don't have a firm diagnosis yet, I'd recommend you start taking probiotics, if you aren't already. Regardless of what's going on, an effective probiotic will help normalize your gut ecology. The constipation and mucous are signs something's irritating your colon and impairing it's normal function. If it were me, I'd try an elimination diet to see if a particular food is causing or exacerbating your symptoms. Gluten and dairy are two big offenders, even though most folks consider them to be "healthy" foods. High sugar intake can be a problem, too.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 1/18/2008 9:53 AM (GMT -7)   
I was actually happy when I was diagnosed because I spent almost 2 weeks in the hospital before they figured out what it was. I was glad to just knwo what I was up against.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort


Mad2
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/18/2008 1:36 PM (GMT -7)   
quincy said...
Hi..welcome to the forum. It's not clear yet as to what you actually have, and it seems you aren't officially diagnosed with UC.

Did the doc tell you exactly where your colitis is extended to? limited or throughout?

What meds are you on at this time?

quincy

Thanks for responding. I talked with my doc 2 nights ago after having the colonoscopy and he said I have Colitis. Which he said is just a big word for inflammation. He said it goes from my "hole" to 6 inches behind it. The rest of my colon is normal. He did not see any ulcers though. He did a biopsy to see if I have an infectious type of colitis but he say's he doubt's it and is confident I just straight up ulceratice colitis. Actually on my paper here it says "Suspect Moderate Ulcerative Proctosigmoditis".
 
He put me on Asacol 3 pills twice a day.
 
I'm really upset because 10 months ago I had a sigmoidoscopy. I had NO symptoms other then seeing bright blood streaked on my stool. He found internal hemmroids but my colon was 100% normal. I took hydrocortisone suppositories over the course of about 6 months and tried to get my stool as soft as possible because I would have some blood everyday (not alot). Like an idiot I tried other remedies too. Over the counter suppositories and even squirting a bit of witch hazel into my butt a few times with an ear dropper. Now I'm begining to wonder if that gave me this colitis. What happened was a started passing globs of mucus back in August (After trying all those remedies to stop my hemmroids from bleeding). It stopped for a few months and I think I used a few more suppositories. Then in November the mucus started again and didn't stop. Around Christmas I also developed a new symptom of getting this "URGENT" feeling RIGHT before I passed stool. My stool's are normal (for me that means hard). But that urgent feeling was scaring me. So I told my GI doc and he said it's prally IBS. We did the colonoscopy this past Wednesday and he found inflammation from my butt hole to a few inches back. So that's why RIGHT before I pass the stool I get that URGENT feeling. And I feel like pushing even though I dont' want to...if that makes sense. And it makes my hemmroid bleed like crazy! The water actually has turned pink a few times. After I pass the stool though I'm good to go. Then a few hours later the mucus starts up again. When my stool's are softer though the mucus isn't as bad or so it seems.
 
I should add that I don't have diarhea or any pain. Just mucus and an urgent feeling right before I pass stool.
 
 
 

Post Edited (Mad2) : 1/18/2008 1:39:36 PM (GMT-7)


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 1/18/2008 1:57 PM (GMT -7)   
Its take some time to adjust, I really dont' seem to have it as bad as some of the other people who post here. But I typically worry about how well I'll be able to handle it as I age.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort


WhiteSox1
Regular Member


Date Joined Oct 2007
Total Posts : 135
   Posted 1/18/2008 2:21 PM (GMT -7)   
disco said...
Its take some time to adjust, I really dont' seem to have it as bad as some of the other people who post here. But I typically worry about how well I'll be able to handle it as I age.

I worry about that too.  How will my UC be as I age scares me a little.
 
Pancolitis - Diagnosed on 9/6/07
Asacol 4 pills 3x's daily
Imuran 125mg.
Prednisone 15mg.
Multi-Vitamins
Calcium with Vit. D Tablets


quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 1/18/2008 2:25 PM (GMT -7)   
Hi..no, all you did didn't give you UC...it was just developing when you had your early symptoms. Try not to punish yourself, it's counterproductive.

Hang tough, as stated by many..it takes time to adjust. Use your energy to learn about UC, its meds and how to use them effectively.

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


UChick
Regular Member


Date Joined Jun 2006
Total Posts : 164
   Posted 1/18/2008 11:23 PM (GMT -7)   
Think of it this way...you may be diagnosed with it, but at least you don't have the pain that goes with it. And let me tell you that it isn't any fun. Also, you could have a really really mild case. I myself was diagnosed with a MILD case of "Indeterminate (Ulcerative) Colitis." Sometimes certain medications can be a trigger to UC or Chron's, which I believe was the antibiotic, Augmenton, in my case. Good luck and don't stress that makes it worse.
Age 17

Diagnosed September '01
Remission since July '02

Asacol- 4 pills 3xday
Azathioprine- 75mg 1xmorning
Took Remicade 3 times, BIG FAN!!!!


theklep
Regular Member


Date Joined Nov 2007
Total Posts : 75
   Posted 1/19/2008 3:25 AM (GMT -7)   
Hey Mad, just like everyone else on the board be aware that this is something that takes time to get used to. I was diagnosed a few months ago and I am still adjusting, but I have a mild case like you, and with my medication I am fine and lead a normal life. You shouldn't let it get you down, at first I was like, "Great now my life is screwed". But than after dealing with it and getting the correct meds I am fine and sometimes forget I have UC. It is really about working with the meds and making sure foods agree with you. Also I think I might a victim of Augmentin as well having had a bad case of pneumonia and being on heavy anti-biotics, totally know how you feel. Hang in there I'm 23, its not the end of the world. Just take those meds! :)
Jeff, 23, Diagnosed July 2007 probably had it since 2005 but no real symptoms till July 2007 *Left Sided UC*
Lialda - 2.4mg 2x Day
Rowasa 1x (for spot treating and flare ups)
Centrum Multi-Vitamin 1X Day
Lexipro- 1x Day 10Mg
Ambien- 1x Day 10mg
Omega 3 Fish Oil- 2x Day


mook
New Member


Date Joined Jun 2007
Total Posts : 16
   Posted 1/19/2008 8:56 AM (GMT -7)   
keep up on your meds

even when you're in a remission stage

you dont want it to get real bad.

and most GI doctors are very helpful so if you have any questions or concerns dont be afraid to call him/her.
Male, 17
Diagnosed March 07
Daily:
12 Colazal
1 Mesalamine enema
 


Mad2
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/19/2008 10:04 AM (GMT -7)   
theklep said...
Hey Mad, just like everyone else on the board be aware that this is something that takes time to get used to. I was diagnosed a few months ago and I am still adjusting, but I have a mild case like you, and with my medication I am fine and lead a normal life. You shouldn't let it get you down, at first I was like, "Great now my life is screwed". But than after dealing with it and getting the correct meds I am fine and sometimes forget I have UC. It is really about working with the meds and making sure foods agree with you. Also I think I might a victim of Augmentin as well having had a bad case of pneumonia and being on heavy anti-biotics, totally know how you feel. Hang in there I'm 23, its not the end of the world. Just take those meds! :)


Yea I'm in that stage right now "Great my life is screwed". I'm 26, I surf alot, snowboard, rock climb, and I love traveling. And for the past 2 months I've done none of those things. I feel extremly lucky that this is only affecting such a small part of my colon (the last few inches before the exit) but I'am SOOOOOOOOO scared that it will spread.

The urgency I have to go is awful. And it's only when my stool hits right before exit so I don't have to suffer long. I absolutly cannot imagine having that urgent feeling from further up the colon. I really think I would crap myself. Plus my stool's are always hard so I'm sure that aggrevates the inflamed tissue even more.

My doc said this could be my only bout for life, or it could spread, or it could stay the same on and off. And I'm not good with uncertainity. I have anxiety so I'm always a worst case thinker in the begining. I'm trying so hard not to fall into "I'm ****ed...this is just gonna get worse and I'm gonna have to quit my job and my girlfriend is gonna want to leave me.....and I can't blame her!".

Again, I know I don't have it anywhere near as bad as some. These are all my what if's. I never wanted to rely on medication for anything. I don't even take Tylenol! And now I have to take Asacol for life?!!!! And then there's the possible side effects from that! I could end up on more med's just to fix the problems from that!

Trying to breathe!!!...........

quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 1/19/2008 1:32 PM (GMT -7)   
Well, you should be on rectal meds as well...please consider this suggestion.

q
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


UChick
Regular Member


Date Joined Jun 2006
Total Posts : 164
   Posted 1/19/2008 5:17 PM (GMT -7)   
Disco...according to http://www.cnn.com/HEALTH/library/DS/00598.html

"The course of ulcerative colitis varies, with periods of acute illness often alternating with periods of remission. But over time, the severity of the disease usually remains the same. Only a small percentage of people with a milder condition such as ulcerative proctitis go on to develop more severe signs and symptoms."

This site is a pretty good read especially if you've been recently diagnosed with UC.
Age 17

Diagnosed September '01
Remission since July '02

Asacol- 4 pills 3xday
Azathioprine- 75mg 1xmorning
Took Remicade 3 times, BIG FAN!!!!

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