• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

So confused

About two and a half weeks ago I went to my regular physician and had ct scans and was told that I had Chron's Disease. Which I have suspected it. I have had abdominal pain, diahearea, nausea, vomiting, rectal bleeding, loss of appetite, weight loss, fatigue, headaches, i'm sick all of the time with viruses, colds and at one point pneumonia. I'm always cold as well. Sometimes the symptoms are worse then others but, the abdominal pain, diaherea, weight loss, loss of appetite, headaches, nausea,fatigue have been constant for a year. The vomiting and rectal bleeding come and go. I can't differentiate between foods I just feel like everything irritates me good or bad. I had a colonoscopy done, I am awaiting my biopsies and blood tests. The doctor said everything looks fine. My family thinks I have IBS but, something is telling me other wise. My aunt has celiac disease. I have also taken a 6 month dose of accutane, the highest dosage two times a day.

I guess what I am getting at is. How could my colonoscopy be fine but, what I am feeling seems other wise. I don't ever get constipation or gas. I do feel bloated and my stomach is sensitive to touch and I can't even sleep on it at night. It wakes me up early in the mornings as well usually because I have to go diahearea. Plus I do not feel relief after a bowel movement I still have pain and nausea.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Because a colonoscopy only looks at the colon and the very end of the small intestine (really just the opening) and biopsies may tell another story. Your issue is more than likely higher up in your small intestine if not higher. Hopefully your doctor will want to do more tests such as a barium swallow with x-rays, MRI, pill cam, something that will show what's going on in the rest of your digestive tract. Yet you said you had a CT scan, where did they say the Crohn's was affecting you (its usually localized somewhere but can be in more than one spot)? What sort of treatment plan did they suggest?

Welcome to the forum btw. :)
 

Angrybird

Moderator
Location
Hertfordshire
Hi there and welcome to the forum, are you under the care of a gastroenterologist? If so was it them who said the CT scan showed crohns? As already mentioned the scope can only go so far so other tests should be done to look at the small bowel in more detail as this could be where the issue lies. What is happening next for you, do you have an appt booked to discuss the next step/plan of action?

With regards to foods have you tried eating things like soups and mushy things like mash potato, this may bring a little relief as they will go through the bowel more easily....
 
Help, newly diagnosed.

I got diagnosed with chron's about 2 and a half weeks ago , well by 1 doctor(my normal physican ran tests on the spot) the 2nd(gastroenterologist but, ever since i've gone to him i've felt like he isn't taking time or care) ever since the first day he's been telling me I don't have it. So he did a colonoscopy. I did not drink all of the solution still had half of my second dose. I also ate some orange popcicles. Said they don't know what is causing my symptoms and they're only getting worse. They took me off the medicine and told me I can eat whatever. Since that day it has gotten worse. I have a 101 fever today, I've lost over 10 lbs in 2 weeks. I can hardly eat, I'm sore to the touch on my stomach, I cant even sleep on it at night. My diaherrea never stops. Nausea, vomiting sometimes, headaches, fatigue. This has been going on non stop for almost 3 years. I have also had rectal bleeding, random eye irritations where it looks like I have pink eye but, I go to the doctor and it's not let alone they couldn't figure that one out at all. Plus I was on accutane as well almost 31/2 - 4 years ago.

I just feel so lost and confused.
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome :) I'm sorry you're having so much trouble :(

I have merged your other Your Story thread into this one since it provides a little more information.

What blood tests did you have done?

You don't have IBS unless the bleeding is from hemorrhoids.

I'm glad you joined. Please keep us updated as to your progress :)
 

Jennifer

Adminstrator
Staff member
Location
SLO
A lot of people aren't happy with their first GI doc and many have to go through a lot until they find one that listens to them and actually helps them. My first one was great but then I moved and had to see someone else. I'm on my 4th GI now and want a 5th cause my current one is a complete dip. Wish I could see my first one but he only sees kids and I unfortunately grew up (my insurance wont cover it but he would see me in a heartbeat). You should find another GI and get a second or tenth opinion if you have to until you get a concrete diagnosis and proper treatment.
 
Thank you so much for the replies. Yes I had a CT scan by my normal physician which I have been to before for all my problems which a year ago they sent me to a GI and had a barium x-ray they advised me to get a colonoscopy and an EGD. Which I never ended up getting.A year later I got the colonoscopy which I didn't drink half of my 2nd dosage of solution I just couldn't. I got blood tests and biopsies. I talked to the nurse today and his exact words were "we don't know what is causing your symptoms". The CT scan came back positive I've seen it and it doesn't look so good. I have a follow up appointment this friday to see what to do with my GI. My sympotms are just horrible though and haven't gone away for going on 3 years. At times gets worse but, never goes away. I can't remember the last time I had a normal stool.
 
Top