how often do we need colonsocopy?

Long story short, 29 y/o male active crohns, last colonoscopy at end of 2002 11/02 about 5 years ago , i have been meds and symptom free for 3 years (remission) without seeing a dr. Ive been flareing up and needed some light meds (asacol and cipro to help go back into remission and I got a new dr who is in the same clinic as my old one the (V/A hospital in philly) and wants to do another colonocopy, my last gi said 8-10 years. I hate the drugs and being sedated like that and am not in a full flare (yet!) and dont feel the current situation warrants another colonoscopy? any thoughts? how often do you get yours done? any deedback is appreciated. thank you oneil420

[lizziecee]

Hi - welcome to our Crohn's Community forum, where we can sometimes answer queries, from our own experience, but can always give emotional support.

I have had Crohn's for 38 yrs, with numerous flares along the way, including some hospitalisations for rectal haemorrhages caused by burst ulcers and crypt abscesses in the large and small intestines. During bad flares, my gastro usually does a colonoscopy and upper GI endoscopy to get a full picture of where the inflammation is and how extensive.

However, he is concerned at the amount of radiation this entails, and although I was not in a flare at the time, he ordered an MRI of my lower abdomen last November. He said this test is "non-ionising".  This showed two strictures in the small intestine, which I was not aware of as I was asymptomatic. My hospital has only just started doing MRIs for Crohn's and I guess my gastro wanted a current picture of what was going on as I have been on methotrexate for 7 yrs.  About 2 months ago I suddenly got severe nausea, total loss of appetite, weight loss of some 14 lbs, and pain in my chest.  He did a CT scan which showed evidence of inflammation in the terminal ileum (last part of the small intestine, where Crohn's usually starts), and a gastroscopy which showed stage 1 oesophagitis. He prescribed domperidone for the nausea, omeprazole for the oesophagitis, and an elemental diet, Fortijuice, for the weight loss.  

He said he is not at all sure if the oesophagitis is Crohn's spreading up the GI tract, or due to side effects from a bisphosphonate (alendronic acid) that I have been taking for 3 yrs to counter bone density loss from the Arimidex I have been taking to prevent a breast cancer recurrence.  I am seeing him tomorrow to get histology results on the oesophagal biopsies and sort out a treatment plan. Meantime he has doubled my methotrexate, which he thinks I have become resistant to, and added in Budesonide (entecort) to help subdue the inflammation in the small intestine and thankfully, I am feeling a little better and starting to eat a low residue diet along with 3 bottles a day of the Fortijuice.

As you can see, there are many different ways to control a flare, and not all treatment plans suit all patients. It is often trial and error.

I don't think gastros will order colonoscopies unless they have a reason to do so as it is very invasive testing, and not without risks of perforating the bowel. One non-invasive test I have regularly is a Calprotectin Stool Assay test - all you have to do is give a stool sample and it is checked in a laboratory for the calprotectin level. If it is out of range, norm being 20, mine is often 40,  then this is indicative of inflammation somewhere in the GI tract, but not specifically where. This gives the gastro the green light to consider invasive tests, such as colonoscopy and/or endoscopy. I don't know if this test is done in the USA, but it is quite common here in England. You could Google it for further technical information.

Not sure if this is "too much information", but wanted to give you my own experience, as I hope others will do so.

Take care,
Liz (Crohn's Community Leader)