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Undiagnosed IBD?

Hello, I am new to this site and have decided to join in order to get some answers from some experts. That is from people who have been diagnosed and live with IBD every day.

I have had bowel problems since I was around 18 (I'm 28 now) in the last 3-4 years it has gotten significantly worse. I have been taking IBS medication which does nothing on and off for ten years. In the past year I have been hospitalised with septecemia (which the cause was unknown, possibly an infection from my gut I was told) and I have also been hospiatlised with a small bowel obstruction which apparently was ok to leave due to my ability to eat.

In January I had a laparoscopy due to my terrible abdominal bloating and pains. It gets to the point where I cannot go to work nor look after my two young sons. There they found an adhesion linking my bowel to my left tube but I have had no previous surgery therefore the cause is unknown.

More recently I have had diarrhoea with a lot of bleeding upon wiping. I had a colonoscopy two months ago which showed some inflammation but that was all. in the laast month I have had excess rectal bleeding when opening my bowels and cold and flu symptoms at the same time with a fever.

I went to a & e last week and was told that I am showing signs of colitis and was given antibitics and told to see my bowel consultant sooner. Appointment now made for July.

My brother has crohns and was severely ill but I know my own body and this is more that IBS, I am convinced.

How can they rule out crohns with one colonoscopy. My blood tests sometimes show inflamation and sometimes don't. I would really appreciate your thoughts on this and apologise for the long post. I am so tired and as much I do not want IBD I am desperate for a disgnosis so that I can treat these symptoms. Should I demand them to check my small intestine and can a negative colonoscopy completely rule out IBD from the colon?
 
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Trysha

Moderator
Staff member
Hello Dunni,
Welcome to the forum.
With your continuing symptoms and family history it is good that you will be seeing
a GI specialist hopefully soon.
It is usual to have a complete blood workup as well as endoscopic exams for upper and lower GI tract.Talk to the specialist about this.
St Marks Hospital in London is one of the best hospitals for diseases of the rectum and colon.If geographically convenient to you it is the best place to go.
I am sure there will be other forum members along to give their experiences and advice
Feel better soon
Hugs and best wishes
Trysha
 

Angrybird

Moderator
Location
Hertfordshire
Hello Dunni and welcome to the forum. When the colonoscopy was done do you kow if any biopsies were taken? Sometimes the bowel can look alright but biopsies then confirm a crohns diagnosis. Also the scope in this test can only reach so far so further testing to look further up should be done as this could be where the problem lies with you so really push the doc about this. There is also a undiagnosed sub forum here so do check this out as well if you have not already: http://www.crohnsforum.com/forumdisplay.php?f=75.

I hope you can get some answers soon hun.

AB
xx
 
Hank u angry bird and trysha for your kind words :) yes I had biopsies taken and haven't been informed of the results yet. Will find out on the 11th July. I'm sure the doc in a&e told me the results are fine. But I'm not. Haha. I haven't eaten today and feel a but better but that's no good. Need energy to function. London is about 300 miles away trysha as I live in Darlington. However if I dont get answers I will travel for another opinion. Thank u both again. Hope u are both well. Xx
 

David

Co-Founder
Location
Naples, Florida
Hi Dunni,

I can only echo what was said above. With your symptoms and family history, you definitely need more testing. They absolutely need to check the entirety of your small intestines and see what is going on in there. Some tests you may want to discuss with your doctor include capsule endoscopy, CTE, MRE, and small bowel follow through. In addition, something like a [wiki]fecal calprotectin[/wiki] or [wiki]fecal lactoferrin[/wiki] might convince them to stop thinking IBS.

Again, welcome to the community :)
 
Hi David.

Thank you for that info. I feel a little more confident going to see me doctor and ask for those tests.
Just need to keep logical with the docs and not take any nonsense :)
Thank u again. Will share any updates I have.
 
Well after seeing my GP today as I am off work with this flare up he has come to the conclusion that I may have colitis.

This was after me showing him photos of the blood that I am losing in every bowel motion. He stated, after ruling out piles, that this is not normal for IBS and that my colonoscopy and biopsies that were taken two months ago must have been taken when I was not having a flare up. He has stated that I need more tests by my GI doc but that he is inclined to think this maybe micoscopic colitis?? Obviously he cannot confirm this without further biopsies.

This is gona be a long bumpy road, I just know it. So pleases I found this forum to gain some support and inspiration from.
 

David

Co-Founder
Location
Naples, Florida
No, microscopic colitis is not characterized by blood in the stool like you describe. My guess is your issue is simply higher up than the colonoscopy could access. He's right that you need more testing by the GI. Likely one of the tests I mentioned above. At least your GP is on board with it not being IBS. Good job with the pictures!
 
Yeah David I had a read of your thread on the sub forum and can see that what I'm experiencing is different mainly because of the blood.

You are both right that it is good that my gp is on the ball. Let's just hope I don't get fobbed off on 11th July. Tbh I'm goin to state that I will seek advice from out patient liaison service here in the uk if they don't do anything. :)

Thanks again guys.
 
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