Crohn's Disease Forum » Support Forum » Undiagnosed Club » Is it Crohns or is it Colitis?

02-09-2012, 06:44 PM   #1
Stephy Chelle
Join Date: Feb 2012
Location: Port Lavaca, Texas

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Is it Crohns or is it Colitis?

So I am beside myself today with worry. Most days I do what I have to do and not think about it. But I'm bleeding pretty good today and that always bothers me. Diagnosis thus far...intermidiate colitis while I wait to do the camera pill test. That's not for another few weeks. I have inflammation in my colon and in my terminal ileum. GI doesn't want to call it Crohns until he looks at the rest of my small intestine. His words exactly. That makes me think he's leaning more towards Crohns. I've lived with this "condition" what ever it's called for 15 years and now that I'm down to actually getting a "correct" diagnoses, I'm super worried. Why is that??? Why now after all these years am I like OMG, what's wrong with me? Which one do I have? Which one is worse? Which one would I cope with better? Which one is gonna put me with a bag later on in life? Aside from my digestive system, I have had kidney stones twice, a butt load of bladder infections, every time I turn around I have a sinus infection, inflammation in my chest wall, blood tests have come back with abnormal liver readings only to come back normal after retesting. What made them abnormal in the first place is what I'd like to know and yesterday had x-rays on my hips to see what is causing them to hurt like they do. MY HIPS! I'm only 36 years old. According to my GI everything is which disease though? Crohns or Colitis? I'm feeling overwhelmed and super frustrated. I don't normally complain about my health, I just push through it and go but today it got the better of me. So I chose y'all to complain to instead of my family. Y'all understand better than them cuz you are going through it too. Any advice, stories, lectures, smiley faces that you can send my way is desperately needed today. Thanks
02-09-2012, 09:18 PM   #2
Super Moderator
DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Hey Stephy,

First up...

You have ileocolitis hun which is a type Crohn's disease. There are 5 types that are characterised by their location...

The five types of Crohn's disease with their symptoms are:

Ileocolitis: Ileocolitis is the most common type of Crohn's disease. It affects the small intestine, known as the ileum, and the colon. People who have ileocolitis experience considerable weight loss, diarrhea, and cramping or pain in the middle or lower right part of the abdomen.
Ileitis: This type of Crohn's disease affects the ileum. Symptoms are the same as those for ileocolitis. In addition, fistulas, or inflammatory abscesses, may form in the lower right section of the abdomen.
Gastroduodenal Crohn's disease: This form of Crohn's disease involves the stomach and duodenum, which is the first part of the small intestine. People with this type of Crohn's disease suffer nausea, weight loss, and loss of appetite. In addition, if the narrow segments of bowel are obstructed, they experience vomiting.
Jejunoileitis: This form of the disease affects the jejunum, which is the upper half of the small intestine. It causes areas of inflammation. Symptoms include cramps after meals, the formation of fistulas, diarrhea, and abdominal pain that can become intense.
Crohn's (granulomatous) colitis: This form of Crohn's disease involves only the colon. Symptoms include skin lesions, joint pains, diarrhea, rectal bleeding, and the formation of ulcers, fistulas, and abscesses around the anus.
There can be overlap between these types of Crohn's disease. Some people have more than one area of the digestive tract affected.
The extra intestinal symptoms (EIM's) you are describing are unfortunately quite common among sufferers and are more common for those with large bowel involvement. Once in remission though, for most people these problems also resolve.

I don't know that any one type is better than the other as such. Both Ulcerative Colitis and Crohn's have their own issues and both cause EIM's but the big difference is, for those with a definitive diagnosis of Ulcerative Colitis, then removal of the large bowel and a subsequent permanent stoma means a cure. There is no cure for Crohn's as it can occur in any part of the bowel from the mouth to anus and as such has the ability to change location.

Good luck hun and just know that we are here with you every step of the way!

Mum of 2 kids with Crohn's.
02-09-2012, 09:38 PM   #3
Join Date: May 2011
I am kind of going through what you are. For 8 years I've been told I've had UC only to have a colonoscopy on Wednesday to wake up and be told it's Chrons as they can see ulcers in the small intestine.

I felt like I was grieving the loss of a person yesterday I was that down. I was hoping to have UC confirmed so at least I could have that chance of removing the whole large bowel and having a J-Pouch and living a pretty normal life. Now that chance is gone I am worried with fear I'm going to end up with joint pain, mouth ulcers and all the other joys that Chrons brings. Surgery now means a permanent pouch on the outside

I too have lived quite happily over the past 8 years, sure I've flared, it's put me in hospital a couple of times, pancreatitis, medication reactions and all the rest but gee wizz it has now hit me hard that I have Chrons.

Let us know how you go.
Ulcerative Colitis since 2004

Currently taking:
4 x 1g sachets Pentasa (every morning)
5mg x Prednisone
Probiotic Daily

Allergic Reaction to Imuran May 2011.
Reaction to Cyclosporin Nov 2011.
I've said no to Methotrexate as it sounds toxic and GI doesn't like using it.
Next stop may be surgery.

Had a major flare last Nov, hospitalised where I haemorrhaged. Ended up in ICU and blood transfusion.


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