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Crohn's Disease
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Posted 4/1/2013 3:37 PM (GMT 0)
I had a colonoscopy on Friday. It was to check and see if there was active disease and see if the Humira was working. I still have pain and D on a daily basis and the doctor was concerned that I wasn't symptom free. I am waiting to hear back from her about the biopsies but she did say there was no inflammation but a few polyps. How much can you actually see with a colonoscopy? There was talk that some of the pain could be from nerve endings. How can someone tell if this is the case or not? Can you see the small intestine from the colonscopy? Just trying to figure it all out.

Thanks for any input you can share.
Posted 4/1/2013 3:58 PM (GMT 0)
The doctor should be able to get into the last bit of the small intestine (called the terminal ileum) during a colonoscopy. Sometimes they can't.

It's hard to distinguish symptoms of inflammation from the non-inflammatory bowel issues many people experience. I know I struggled with this for a long while. Blood tests were clear and I was unwilling to be scoped, but I did do an abdominal CT, abdominal u/s and HIDA scan before agreeing that my problems (loose stool, crampy urgency) were not inflammatory.

I hope you get some answers soon. It's possible biopsies will show inflammation that the DR couldn't see via scope. When is your follow-up appt?
Posted 4/1/2013 4:04 PM (GMT 0)
I don't have a follow up appointment as of yet. She said she would know more from the biopsies by Wednesday and call me. I did not want to have the scope done. I am ok with how I am doing. I never expected to be symptom free and I have learned to live with the ones that I have. My husband pushed me to have the scope to make sure everything was ok. After doing it I got to thinking about the fact that you still can't see everything and so was the scope worth it? I don't want to add any extra medicines to what I take right now. I am tired of new medicines and new side effects. I am afraid that I will be told it is nerve endings causing the pain and be written a new script.
Posted 4/1/2013 4:33 PM (GMT 0)
I guess it depends on how debilitating the pain is. I know that after childbirth the way I felt pain in my pelvis was a lot different. It seems to have gotten less intense over the years - maybe you need more time for your body to adjust after the birth of your last child? My youngest is 11 if that gives you any reference points.

I was not satisfied with the quality of life I had - there was pain in my upper right quadrant that would wake me up at night and give me spasms during the day. After all the testing I did it turned out to be constipation, so I have played with different ways to keep my bowels moving (started with miralax, ended with psyllium, which I still take). The soft stool and crampy urgency issues went away completely when I went gluten free, which was the other thing I did to help resolve my issues once I was convinced it wasn't inflammatory.

I think your husband was right to insist on getting you scoped. More information is always good.
Posted 4/1/2013 7:41 PM (GMT 0)
Is your CD in your colon or does it include your small intestine? If it was only found in your colon then the colonoscopy will show how it's doing (and they can usually see the TI) but if you have/could have small bowel involvement you would want to have a small bowel series or even a pill cam done. That will give you a better idea of how your small intestine is doing.

It is good to hear that your doctor took biopsies of your colon. Make sure you get the results of those biopsies, too. The fact that you are still having pain says that something is going on and it's better to find out if it could be inflammation in your small intestine and treat it to keep it under control.

It could be that your current medicines may need to be adjusted or others tried. I know it's daunting to try new meds and deal with the new side effects but if they allow you to keep inflammation under control and minimize scaring it's worth it.
Posted 4/3/2013 2:12 AM (GMT 0)
I have had 2 colonoscopiesand an upper endoscopyall showing my intestines were completely healthy. A month later, I was inpatient with a bowel obstruction and an MRI showed I had 5 strictures in my small intestine which is when the crohns was diagnosed. The area was above where the colonoscopy could reach and below where the upper endoscopy reached (just my luck). So in my case, a colonoscopy did not show a single thing wrong with me! If yours has the same results, maybe try a different type of test. I ended up needing a bowel resection this past February...and to think I was disease free after the colonoscopy!
Posted 4/3/2013 6:03 AM (GMT 0)
Small bowel follow through test is generally used to check out crohn's affecting the entire small bowel.
Posted 4/3/2013 3:46 PM (GMT 0)
Thanks for all the responses. I am hoping to hear back from my doctor today about the biopsies.

Equestrian Mom - My crohns was originally in my small intestine. I had 18 inches of my small intestine including my ileum removed. I have had a small bowel series in the past but this time just the colonoscopy.

I think I am just anxious and feeling a little uneducated this go around. I feel like some of my family is so worried about me feeling better and being symptom free that they are not listening to me and how I feel and what I can handle. I guess I am looking to have all the info I need to stand my ground and explain to them why I feel the way I do. I recently explained to my brother (who has back problems and can somewhat understand what I go through) that I am very luck to have a wonderful family that cares a lot about me. But sometimes even more exhausting then the disease is all the loved ones that want to fix you.
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