a dream, and irrational rambeling

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ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/19/2008 3:13 PM (GMT -6)   

I always have these dreams (or maybe I should call them nightmares), mostly in my sleep but a lot of times I have them while I’m awake too where I just sit and think about worst case scenarios for various situations, like what would happen if someone I loved were to die tragically, or if I got into a terrible car accident. It’s definitely an anxiety problem that I’m trying to work on but sometimes I just can’t help thinking about them.

[[Last night, I had this dream where I went to see my new GI doctor (I have an appointment set up the second week in July after my new insurance kicks in) and he wanted to do a colonoscopy. It’s been three years since my last one and I’m flaring now so naturally, being a new doctor to me, he wanted to see for himself what things were looking like. After the scope, he gave me the bad news that I had high grade dysplasia in my ascending colon and that I would need to have my colon removed. He said there’s no way of knowing but that it might have been caught sooner if my other doctors had done more than sigmoidoscopies all the time. Of course, I got really upset and told him I wasn’t ready for a full removal and requested just a resection which he claimed would be pointless seeing as I would just have to go get the rest removed later. I woke up before I found out what happened next.]]

 

This got me thinking; how often do you all get colonoscopies?

 

I’ve had ulcerative pancolitis for 9 years now, and I realize that my risk of cancer, while not definite, is higher than the norm, especially considering

  • I’m not great with med compliance,
  • I used to be a 2/pack a day smoker,
  • I eat red meat more frequently than I should in addition to eating very little fruits and veggies,
  • I exercise way less than I should, and
  • I have no knowledge of my family history (I was adopted and the records are closed).

So, I worry about it a lot and what freaks me out the most is that I don’t think I would even notice the warning signs until it was too late, because the early symptoms are usually the same as UC symptoms! According to some studies, just because I have pancolitis, I’ll be at 30% chance of getting cancer by the time I’m 39 years old.

 

With odds like that, even though it may be completely irrational to think this way, it would be make me feel a lot better if I at least had one colonoscopy a year. As much as I had the prep, I’d drink it every week if it meant catching cancer early. Am I worrying about this too much? I always thought after 8 years of disease you’re supposed to get one once a year anyway.

 

Also, if you don’t catch colon cancer at an early stage, it’s much less likely to be curable, even with a colectomy. So my overactive brain tells me that maybe it would be worth it in the long run to just get rid of the source before the cancer even has a chance to think about appearing. I mean, why wait until the last minute and risk dying [from colon cancer specifically; obviously we're all going to die from something eventually] even with the colostomy? It seems with all the troubles and risks and frustrations and worries, that it would just be safer to get rid of the darn thing before it’s too late.

 

Sometimes I think it’s these thoughts that are going to be the death of me instead though, hahah.

Sorry if I'm being to crazy or freaked anyone out!!


Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


PumpFast
Regular Member


Date Joined Jun 2006
Total Posts : 140
   Posted 5/19/2008 4:07 PM (GMT -6)   
I've also has pancolitis for 9 years.

My doc recommends a c-scope every 2 years.

I would be more comfortable with one a year. I think the GI's are taught that the dysplasia-carcinoma in IBD come very slow and occur over several years.

Another issue I have is the doc is in and out within 10 minutes. He grabs maybe 5-6 biopsies and calls it a day. That is maybe 10% of the colon. What about the other 90%?

In any case, there is a new test called Pregen Plus that looks for DNA changes in the stool. http://www.directlabs.com/PregenPlus.php

This maybe a great test to use in between c-scopes. good luck,

PF
6MP, Asacol, Rowasa
VSL#3, Florastor (Saccharomyces boulardii), Mutaflor(E. Coli Nissle 1917)
TSO (helminthic worm therapy)
Psyllium Seed Powder, Turmeric Extract, Fish Oil, SeaCure
Multivitamin, Folic Acid, Vitamin C, Alpha Lipoic Acid, L-Carnitine, L-Taurine
Ulcerin I and Ulcerin II (ayurveda herbal medication for UC)
Low Dose Naltrexone 4mg


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/19/2008 4:30 PM (GMT -6)   
That's what I worry about!! Sure, they checked out a small portion of my colon, but what if there are cancer cells somewhere else that they didn't check? I mean, it's not like I want them to biopsy every inch, I just get overly analytical.

Thanks for the info about Pregen, that's pretty interesting! I'll have to check that out.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 5/19/2008 4:32 PM (GMT -6)   
I've had UC for 27 years now. My GI wants to do one every 2 - 3 years, more often when flaring terribly. I'm not too concerned about cancer because the way I look at it.......We get more conoloscopies than people without UC, so the Docs would see problems alot sooner. I know we are at a higher risk of colon cancer having had the UC for many years, but still, how many people over 40 really get colonoscopies just because it's recommended? I started out with lower left sided colitis, after this past flare that lasted 2 years, 3/4 of my colon is now involved. Maybe you should try to relax a little. Just think, we are looked at more often and more thoroughly then non UC'ers..........
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/19/2008 5:06 PM (GMT -6)   
My doc does every 2 years. If the inflammation has ever extended as far up as the transverse colon, he goes to annual after you've been diagnosed for ten years. Also if there's a positive family history, he goes to annual after ten years.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


demchim
Regular Member


Date Joined Dec 2005
Total Posts : 124
   Posted 5/19/2008 11:13 PM (GMT -6)   
My GI doc says after having colitis for 8 years a colonoscopy should be done yearly to look for dysplasia. Colon cancer is highly preventable and I'd rather have a colectomy for dysplasia than metastatic ca.

lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 5/20/2008 7:27 AM (GMT -6)   
C-scope every 18 months, left sided for 15 years. I also have those day dreams.....I look at is as a sort of preparing for the worst, but hoping for the best. I guess I am prepared for bad news, but am pleasantly surprised when it doesn't happen. Glad to hear I am not the only one.
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 5/20/2008 8:26 AM (GMT -6)   
I (try) to not worry about colon cancer too much.  I prefer to get a scope every year to stay on top of things.  I figure when getting the biopsies, that the doctor would be looking for any unusual areas to biopsy and that they are trained to look for signs of cancer (hopefully).  I personally worry more about being in pain or losing too much blood, becoming dehydrated, passing out, etc.  You are only 22 and you listed things you are doing wrong.  Why not start trying to change those bad habits?  Start slowly and make some goals to reach over time.  yeah yeah yeah yeah
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08

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