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Crohn's Disease Forum » Your Story » Hey everybody! My Story....


02-09-2009, 02:12 PM   #1
sidney88
 
Hey everybody! My Story....

I was diagnosed about 1.5 years ago with both Chrons (think she said mild) and Ulcerative Coitus (Moderate).

Until lately, I haven't had much discomfort, just blood every now and then (more lately). So my Doc put me on Pentasa, and Rowasa. She also recommended Digestive Advantage for a probiotic (which I only recently started taking on an empty stomach).

I'm pretty good about the Pentasa, and I try to do the Rowasa...although I normally just put it in at night and leave it there...as opposed to twice daily, for 30 minutes at a time. Maybe that's a bad tradeoff, I'm not sure.

The biggest thing that bothers me is my doc didn't give me very much advice outside of take the meds. I asked her about food, and she said don't eat it if you react to it. No general guidelines, no book recommendations, nothing. Only problem for me is blood has been a constant for the last 1-1.5 years...I'll never go more than 4-5 days without seeing it, and its often around for many days at a time. So I can't single out what causes problems. I assume my colon is getting messed up pretty badly (what do you guys think), so I'm trying to get control of it and that's what brings me here. I'm starting to read some books on what to eat, and adjusting my diet and lifestyle to accommodate. We'll see what happens

I will say I'm happy to have found you guys though. I've already got some good info from just casually browsing around!
02-09-2009, 03:11 PM   #2
Creepy Lurker
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Hi Sidney.

I was under the impression that you couldn't have both, but I could be mistaken. I've seen plenty of friendly arguments about that before.

You might want to change the spelling mistake in Colitis. Your version means something quite different
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02-09-2009, 03:40 PM   #3
sidney88
 
I've read that as well...but she showed me pictures of inflammation in the small intensive but she said I also have colitis too since it's in the large intestine as well. It's been a while, so I could be mis-remembering. I'll clarify with her this week.
02-09-2009, 04:05 PM   #4
soupdragon69
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Hi Sidney,

Welcome to the forum!

Its possible you have Crohns Colitis and not Ulcerative Colitis. Basically means there is crohns inflammation in the colon.

If you have Crohns ileitis like I have then it would be in your ileum which is the latter part of the small bowel.

Does that make sense?

Good to see you here. Looking forward to seeing you posting more!
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Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
02-09-2009, 08:21 PM   #5
timetogo
 
welcome syndey
02-09-2009, 11:44 PM   #6
Starbelly
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...or you could be one the few who display symtoms of both. Typically, if the inflammation is anywhere higher than the large intestine it would be Crohn's, as UC tends to stay lower and will be continous. Whereas Crohn's can be anywhere in the GI tract and can be broken up with sections of healthy/diseased tissue. A biopsy and subsequent pathology report could tell you for sure... sort of. If you are like me, then you can have visual signs of Crohn's even though the pathology says otherwise. (inflammation skipping around, but staying in the large intestine, kidney stones, external manifestations, near perforations) A few people I know were originally diagnosed with UC and then later diagnosed with Crohn's. As far as meds go, it might not matter because you will be taking the same drugs. As far as surgery goes, you have to be careful because if someone was to have a colectomy and then discover they actually had Crohn's, the disease could just move up into the small intestine.

As far as the bleeding goes, just make sure you keep your doctor informed of any changes in your overall health. While defecating blood is annoying, you should be ok, and sometimes it takes a while for the meds to get you under control, especially if the bleeding is coming from the distal portion of your large intestine. Be careful though, because if you start getting really sick then your body may not replace the blood you are losing. Trust me, if that happens, you will know. Or if cup-fulls of blood are coming out... but again, you will know.

As far as the doctor's advice or lack of it, unfortunately he/she is right... sort of. You kind of do have to figure out what you can eat or can't eat on your own. Some people think the disease is caused by food allergies, some think that it is 'triggered' by certain foods, and for them it probably is. I have not found any specific diet that does anything for me one way or the other, but I have heard of diets that have worked miracles. So far, Remicade is the only thing that has been 100% effective for me (complete remission for 2 years!) but it has some drawbacks too. The best advice will probably come from this message board. This forum is a great place for getting advice and suggestions on diet and meds. So hopefully you will find some of the answers you are looking for and get well soon!
02-10-2009, 08:26 AM   #7
AIjen
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Welcome to the boards!!! you will find a lot of information here!
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Current Diagnoses: Asthma (Can't remember), Hashimoto's (June 07), Psoriasis (March 08), Undifferentiated Connective Tissue Disease (Jan. 08), Fibromyalgia (Jan. 08), Crohn's (Dec. 08), Chronic Fatigue Syndrome (June 12)

Current Medications: Levothyroxin, Lyrica, Advair, Cimzia, Zyrtec, and Prevacid. Back on Pentassa 12/04/12.
02-10-2009, 08:49 AM   #8
Nancy Lee
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Location: Windsor, Ontario
Hi Sydney and welcome to the Forum!

I too have both and my doctor refers to it as Crohn's Colitis.

I'm sure you will find a lot of information as you read through the Forums here.
Any questions just ask away...there will probably be someone with similar
symptoms who can give you suggestions.

I would tell your doctor of the continued blood loss as it can result
in anemia if let go.

All the best...
and once again
WELCOME!!
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02-27-2009, 11:56 PM   #9
sidney88
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Ok so I had my second colonoscopy today...chrons is looking better at the terminal illeum, still have some colitis, and the proctitus is the a recent development and is the biggest deal at the moment. And to answer earlier questions my diagnosis is definitely chrons colitis.

I don't remember this part (good drugs lol) but there were two spots biopsied...no polyps, but for some reason she took some sample. What could she be looking for?

Oh and after my latest flare, she ordered a CT scan and todays colonoscopy. I thought those were an either or thing but I guess she wanted to see results from both. The CT found some thickening of the stomach wall near the bottom of the stomach so now she's talking about doing an upper endoscopy. yay. sometimes i feel like she's just trying to order/do every imaginable procedure on me for the $ but what do i know.

ok so this turned more into a blog post...so sry about that
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