I have been reading about many of your experiences, and I am impressed by how well you all cope with Crohn’s Disease. I am posting to ask for your suggestions and advice.
My daughter has struggled with intestinal cramps and constipation since 2000. Her PCP treated her for IBS. She managed to control it with diet and sometimes medication (usually hyoscymin ER). (I should add that in 1/2006, she had shingles on her right facial area, and now suffers from post herpetic neuralgia (PHN). She takes gabapentin every day for this along with ibuprofen.) After a severe flare up of the "IBS" in 2/2007, she saw a gastroenterologist. She had an abdominal/pelvic CT with contrast in late June and a colonoscopy in late July. The CT results were normal. The colonoscopy showed an ulcerated area in the ileum. The doctor made a clinical diagnosis of Crohn’s Disease, and prescribed a course of treatment with Entocort. Because we just were not certain that she really had Crohn’s, she opted to skip the Entocort treatment and wait to discuss it when she saw the doctor in 3 weeks.
At that appointment, she brought up how she has to take ibuprofen very frequently for the PHN and period cramps. Nothing else seems to work. The doctor thought that the ibuprofen could possibly have caused the ulcerated area. He prescribed darvocet for her pain and said she should stop the ibuprofen. The darvocet was not only ineffective, but also it caused her to itch all over her body. She stopped it after two days. She managed to stay off of the ibuprofen for about two weeks, but then broke down and took it for ear pain (PHN.) She sees the doctor in mid-September.
--What other tests could be done to make a more definitive diagnosis of CD?
--What about second opinions? This doctor seems reasonable and open to discussing things, but, as many doctors, he is very ready to prescribe meds.
--Many of her symptoms are like those of IBS. When she said that she has never had trouble with diarrhea, but, instead, tends to be constipated, the doctor said that diarrhea is not always that prevalent a symptom of CD. Have any of you found this to be true?
--Have any of you used diet to control your CD?
--What experiences have you all had with Entocort? We are fearful of our daughter taking a steroid. She is an elementary school teacher and is constantly exposed to all sorts of viruses and bacteria. Also, she is in a high-risk group for osteoporosis and has a family history of high blood pressure. We know if she has CD it may be necessary for her to take steroids, but the side effects are very scary.
Thank you for reading this and for any input.
Crohn's is a very difficult disease to diagnose, as its symptoms and physical manfestations mimic many other conditions. Her ulderation in the terminal ileum could be a sign fo Crohn's or of ibuprofen irritation. IBS remains a possible diagnosis as well. One test you do not mention is an examination of the small bowel, where many Crohn's patients have their primary disease. The gastroenterologist could schedule a small bowel follow through (X-rays) or the capsule endoscopy procedures, which is the gold standard test for small bowel problems. From your report, he is proceeding as most GIs would, cautiously and with an opne mind. I see no reason to bolt and go doctor shopping.
Entocort is not a high-powered steroid - I believe it is the one that is time-released in the bowel with less systemic reach than prednisone, which is the one to watch out for. I doubt that a course of Entocort would cause major problems.
You really cannot treat Crohn's solely via diet (I know a few folks will bristle at that.) A good analogy would be diabetes: it's important in both diseases to remove certain things from your diet that aggravate symptoms, but diet alone is very unlikely to address the underlying disease process. Diabetics wisely refrain from eating lots of sweets, but they also take their insulin; Crohn's patients wisely refrain from eating pepper and bulky items, but they also take their meds.
Your daughter's GI doctor seems to be thorough and methodical (as do you and your daughter ).
Ulcerations in the terminal ileum are classic signs of Crohn's, but they also could be caused by the ibuprofen, so the GI is wise to be cautious about giving a definitive Crohn's diagnosis.
Were biopsies taken from the terminal ileum during the colonoscopy? Pathology reports from biopsies may be able to distinguish Crohn's from NSAID-induced ulcerations.
Other than that, the best test remaining to help figure whether it's Crohn's is the Prometheus Labs IBD Serology 7. This is a blood test that looks at certain antibody levels and predicts with pretty good accuracy (>90%) whether a person has Crohn's. If this comes back positive, then it, along with her symptoms and the ulcers on the terminal ileum, would be sufficient to diagnose Crohn's. If it comes back negative, I would think the NSAID (ibuprofen) is the likely culprit, along with IBS.
He could also order a CT enterography, a fairly new CT scan procedure that's similar to the small-bowel follow through but possibly better at revealing thickening or stricturing of the walls of the small intestine.
Thank you all so much for your input. It's exactly what I had hoped for.
Unfortunately, I do not have a copy of the path report from the biopsy on the ulcerated area in the ileum. We thought we had it when we left, but later found that we only had the radiologist's report from the CT scan. I do remember that the doctor said that the path report indicated no conclusive evidence of CD. We will get a copy this week.
The hyoscymin ER does not help with the period cramps. In fact, it aggravates a bladder problem that she has. But it does help the intestinal cramps some, so she continues to use it. She has also used dicyclomine in the past. It made her really spacey, but did help with the cramps. The gabapentin she takes for PHN also has a tendency to make her spacey.
I am encouraged to hear that many of you tolerate the steroids fairly well.
We are really curious about that Prometheus Labs IBD Serology 7 test. All the information from these posts will help tremendously in preparing for the upcoming doctor visit. Thank you!