Confused Newbie My Story Responses VERY welcome

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crazydoglady
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/22/2009 3:02 PM (GMT -6)   
Hi,
 
This is my first time posting.  I am so confused.  Here is my story.
 
My family on my father's side had a bad history of digestive disease.  Dad died of esophogal cancer at age 64 and his father and sister both died of colon cancer.
 
I had a colonospcoy in April 2008 at age 47 due to having increased frequency of BMs and change in consistency of BMs and also a little blood.
 
The colonospcopy showed no cancer so that was a huge relief.  The found some ulceration in the rectal area and the GI really played it down saying it could be Chrons but that is not where they usually see it but was likely from stool sitting there rubbing against it, what?
 
Is answer to everything was eat more fiber.
 
I had a couple of other episodes of bleeding but no pain or anything and figured it was IBS and after two follow ups where I got nothing but eat more fiber I gave up on him.
 
I was trucking along fine until this past February when I apparently set myself up for a huge flare by going off my antidepressant (Lexaparo) and taking a antibiotic for a not even bad sinus infection.
 
I immediately got D upon taking the anti and then very very severe nauseua and abodominal pains.  The pains were scary because that was brand new.  My regular internist wasn't available so the PA thought I had C-diff but only did one stool sample which came back negative.
 
It took me about 4 weeks to get back to somewhat normal.  I then went on the South Beach diet and was feeling great and was just ready to start exercising when I ate a can of LaChoy Chinese food on May 19 and I'm still in the flare from that.  The next day I was so sick and then I had the D and excuse the TMI but the WHOLE CAN of veggs came out undigested and scrapped the hell out of my rectum apparently creating a fissure.
 
So, still not releasing I had UC, I did go to another GI recommended as good by internist.  He listened to symptons and looked at the prior colonsopy and pronounced UC and said he was very surprised the prior GI hadn't treated, Ya think??
 
So, here I am.  Had 10 days of Flagyl which dispite the horror stories I had no nauseau but it made me very depressed and weak as a kitten and I'm a large lady.
On last two weeks of a month of Rowasa.
 
I have been all over the Internet looking at info and forums.
 
To me it seems like mine is in the rectum but will it stay there or move up?
My biggest problem is rectal pain.  I think the Flagly and Rowasa are helping but I also had to ask for a suppository for night time for the pain, I forget the name and I have analpram cream for the day.
 
A huge help, which I have not seen mentioned before, is using mineral oil.  I keeping the area well lubricated.
 
Also, I had no idea how I was going to use the Rowasa as I was that swollen.  The GI said use the analpram 10 minutes prior.  Obviously he does not have the problem himself as that was a no go.  What has really really helped is TONS of K-Y jelly to lube the tube.
 
The reason I am confused is all the conflicting info I've read especially about diet.  When I asked the GI if I needed a special diet he said it made no difference.
 
Hello?  It sure seems to with me.  Also, the fiber yes fiber no is really confusing.
 
I can deal with the urgency and the frequency but what is really killing me is the food that doesn't digest which irriates the fissue and/or ulcers.  Any suggestions?
 
Also, I have never had a rectal exam, only the one colonoscopy?  Is this normal?
 
I have my follow up July 1 so what should I ask?
 
Thanks so much,
Susan
 
 
 

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 6/22/2009 5:02 PM (GMT -6)   
     Hi Susan and welcome.  I too, have ulcerative proctitis, which is what you seem to be describing.  My issues are in the rectum and maybe about 20 cm above.  I can relate to the pain you are having.  My UC started in 1998 after being on the Adkins Diet for about two weeks and just snow-balled after that.  I don't let any doctor tell me it isn't diet related and that it was probably just a coincidence.  BALONEY!  When flaring, fiber is a big no no.  However, since I have diverticulosis too (double whammy), the doctor wants me to have some fiber.  I saw a nutritionist after my hospitalization last year (really sick with this condition then) and she suggested placing 1T of Red Mill ground flaxseed MeAL on top of my rice krispies every day.  This is very beneficial, doesn't hurt the colon at all, at least not in my case.  I take Silk instead of milk, absolutely NO CAFFEINE (love coffee too...boo hiss), with half a banana and honey to sweeten.   For lunch I eat Activia Yogurt with another Tablespoon of the flaxseed meal.  For supper I just ate baked salmon with half a sweet potato and mushy carrots.  Try to stick to a very low residue diet while flaring.
     I am on the Cort enemas, they do me better than the Rowasa.  It is hard to keep them in too, but I give it my best.  I also use Canasa suppositories in the morning.  Right now my other meds are 25 mgm of prednisone, 75 mgm of 6MP and Colazal 750 mgm 3 pills 3x a day....probiotic, fish oil capsule, calcium and multivitamin.
     I know how you feel about it running in the family.  My paternal grandmother died from cancer of the rectum at age 65 (I'll be 63 in August) and dad had been operated on for diverticulitis.  He passed a few years later (1995) but mom didn't order an autopsy, so we will never know if he developed colon cancer or not.  Hope this was of some help to you.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


heathd
Regular Member


Date Joined Sep 2008
Total Posts : 40
   Posted 6/22/2009 5:17 PM (GMT -6)   
susan hiya and im sorry for the UC you have. its really a horrible disease but have faith everything will work out. Diet is a big thing at least for me and its different for everyone. one of the best things i can suggest is a diet diary. keep track of the things that you dont do well with and things you do bad with. everyone is different though. for me i stay away from sugery things caffiene and anything with a husk ( corn beans etc) as far as fiber there are 2 different kinds 1 soluble fiber 2 insolubable fiber. they do different things one bulks up stool and the other softens or loosens. the people here are very helpful they should be able to help but everyone reacts differently to different things. alot of trial and error. for me if i feel bad i try the BRAT diet wortks well till my guts calm down. well hope it helps :)
diagnosed 2004
Prenisone finally off (oct 2008)
Prilosec otc (1 a day)
Sulfasalazine (12 a day)
Flora q (every other day)
Remicade (failed oct 2007)
Humira (started oct 2008)
Multivitamin (1 a day)


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2011
   Posted 6/22/2009 9:28 PM (GMT -6)   
When I'm going to the bathroom too much I stick to starchy foods like noodles and potatoes, that's what my very first GI told me to do.
19yr old female
Diagnosed with UC (pancolitis) in 2005 at age 15, on 2.5 tabs of Azathioprine daily
Arthritis in both knees (thanks UC)
Also: asthma, acid reflux, and Reynaud's Syndrome

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