Newly diagnoses could use advice

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mom4321
Regular Member


Date Joined Aug 2008
Total Posts : 107
   Posted 8/12/2008 6:33 PM (GMT -6)   
Ive had severe diareha for about 8 months or more and finally went in and had all the tests etc..... After my colonoscopy they said my whole colon was inflammed and all the biopsys show inflamation except the small intestine I think so they are unsure if its ulcerative colitus or chrones so Im statign asolcol.  The wierd thing is that my problem stopped once i used the stuff to clear it all out for the colonoscopy and its been a week and its still fine.  IM wondering if the astaxanthin I had been taking for a month prior started healign the problem or its a fluke and it will return or what ? I also stopped all dairy 3 weeks before my colonoscopy but at the time of the test had not noticed any change.  IM just baffled and dont want to take this expensove medication of i dont need to .
Any and all advice would be welcome.

sushik
Regular Member


Date Joined Aug 2008
Total Posts : 35
   Posted 8/12/2008 6:54 PM (GMT -6)   
This sounds exactly like what I went through -- and given your description I'm surprised that they're "unsure" if it's crohns or UC... that's like THE description of UC/Pancolitis... they should at least be "pretty sure" or 90% sure it's UC. I'm assuming that you got a stool sample tested for parasites/pathogens first.

Anyways, my symptoms went away also after the prep/colonoscopy. And I felt pretty normal after about a week so I decided to go off my meds....then a week later I was flaring up again. What I learned, that I hadn't really accepted for the first several months post-diagnosis, is that once you have UC you have it for life and you need to stay on your meds to keep it as managed as possible.

I'm on the fence about astaxanthin. I've tried a ton of "natural" cures with no success and I'm more of a skeptic now than ever.

Stay on your meds, and good luck!
31 yr old male
Diagnosed: 7/07 - UC - Pancolitis
Current Meds: 2 Rowasa enemas/day ; 6 Asacol / day


mom4321
Regular Member


Date Joined Aug 2008
Total Posts : 107
   Posted 8/12/2008 10:16 PM (GMT -6)   

Thanks for the reply. i was shocked after 8 months of this to suddenly have no problem . It made me wonder of I was misdiagnosed.  The reason he was unsure of which it was is that he said chrones is ussally also in the small intestine but that was the one place the biopsy was fine but he said that did not rule out chrones. He said it all really falls under the umbrella of IBD so he would just start treatment with asocol to try to avoid the steroids if possible. Yes, they did the blood tests and sample tests which were fine thats why he decided on the colonoscopy because he counld t find an y reason for my problems.  So you think this sounds like UC to you ? Im new to all this and I dont really know.

I figure the astaxanthin seems to be good for you on so many levels I cant go wrong taking it . if its helps with this thats a plus. I actually started it because if the other benifits though.

I wonder why this started at my age ( 48) never had any issues before. And sometimes it seems worse on days I am at home and not working I dont know why or if thats my imagination.


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 8/13/2008 12:11 AM (GMT -6)   
It sounds like UC to me. I just had a colonoscopy and I've been flaring for a good 4 months or so... I haven't felt bad yet after my colonoscopy. I'm thinking maybe it's because you're so cleared out... I dunno. But I definitely know that flares come in an instant.. especially just when you think you have it beat.

Since there are periods of remission and flare ups... I'm thinking maybe it just didn't show up until now? Or maybe you did have symptoms, but they weren't significant enough for you to think you needed to be tested for something or that you were worried about. It took one HUGE flare to really make me wonder what was wrong with me.. that was two years ago, but before then I did have symptoms.. but not nearly as bad as that.
'

Diagnosed with Ulcerative Colitis March, 07

Medications
Lialda - 4 pills in the morning w/ food.
Canasa suppositories


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 8/13/2008 1:15 AM (GMT -6)   
I agree with sushik, sounds like they are in the same mindframe as me! I'm also assuming you have had an allergy test done as well as lactose intolerance Hydro breath test? Food allergies can irritate the colon walls and feed undesirables in your colon. My opinion ONLY-- but look for natural cures and trigger identification before giving in to the prescrip world. Do what you need to do to get well, that's the objective right? Knowledge is key and the the more weapons you have at your disposal the better your quality of life will be. Thats why i signed in as ucwarrior, I've fought this thing for 14 years medication free with herbs and mental preparation. The only medicine I have ever taken is pentasa for the really bloody bouts but that is only until I regain control then I'm off. I have finally earned the respect of my GI for my efforts but find a good one and LISTEN to them. It sounds like you have a good one by trying to avoid steroids. This is a fight you want to win trust me.

LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1194
   Posted 8/13/2008 1:19 AM (GMT -6)   
I had the same result, inflammation in patches all the way around my Colon but no small bowel inflammation so they are unsure if it is Chrohn's Colitis or UC as yet.

Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.


mom4321
Regular Member


Date Joined Aug 2008
Total Posts : 107
   Posted 8/13/2008 8:46 AM (GMT -6)   

 Ive never had any allergy tests at all or the lactose test but he just told me people with this seem to be sensitive to dairy so to go dairy free and maybe later try introducing a small amount back.   I called my insurnace to see if they would pay for a naturopath but they said no. Where would I get allergy testing ?


Luna0
Regular Member


Date Joined Jul 2008
Total Posts : 83
   Posted 8/13/2008 1:21 PM (GMT -6)   
Ya they thought I was lactose intollerent. But then they said it was UC. Ya it sucks but your just gona have to w8 till the doctors tell ya what it is.
Tawn 
18 years old, College Student ~WAHOO GO CATS=)
 
Diagnosed in 2004
Currently on:
Remicade
Imuran 3pills/day
And many other over the counter meds.


kaykay29
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 8/15/2008 10:03 PM (GMT -6)   
I was told by my GI that approximately 5-10% of IBD cases cannot be classified as either Crohn's or UC. Apparently there is a blood test (last I knew done by a lab in California) that analyzes the DNA but even it can be inconclusive. The best determination is your symptoms although some people have components of both Crohn's and UC. Anyway, this is what my GI told me.
Dx UC 1979 at age 14 - (I know, some kind of record)
Was Mildly Chronic (flares every couple of years) until last 2 years now Chronically Acute
Can only get about a month symptom free between flares now
Asacol, Canasa, Rowasa, Cortifoam (on Sulfasalazine for 28 years previously also Pred)
GI Doc recently told me I have "lead pipe syndrome" which is advanced scarring of colon
No surgery - multiple colonoscopies reveal uc "from rectum to appendix"
My Best Friend is My Shih Tzu/My worst enemy is uc

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