Question:
I have had ulcerative colitis/proctitis for over 7 years. Nothing worked to keep it under control. Now I am on Remicade and it is like night and day. But I tested positive for lupus. And I have symptoms of SLE (systemic lupus erythematosis) I was told it was drug induced. How long does it take to be off Remicade to retest my blood to see if I am still positive for lupus?

Dr. Isaacs:
It is common to develop a positive ANA (which is one of the lupus tests) with Infliximab treatment. Not all patients with a positive ANA will have drug-induced lupus. That diagnosis is made by a combination of clinical signs/symptoms and the blood work. With a true drug induced lupus the symptoms improve after stopping the drug. The positive ANA may not go away with resolution of the symptoms – so it is actually more important that your lupus symptoms improve after stopping the drug – than the resolution of the positive blood work. In one small study from the Mayo clinic – 2 out of 10 patients had a return to normal ANA 4 and 21 months after lupus was diagnosed. 5/10 patients had a marked decrease in ANA 1.5 – 12 months after diagnosis. 1/10 patients only had a slight decrease in ANA and 2/10 patients had no decrease in ANA at 3 and 16.5 months after stopping anti-TNF treatment. In 5 patients a different anti-TNF agent was tried and it was tolerated in 4 without recurrent lupus.

Question:
I recently had a colonoscopy which showed predictability for Crohn's. However the Prometheus 7 showed a pattern inconsistent with IBD. I've had all the usual symptoms over the past 20 years including flare-ups that required hospitalization. How accurate is the Prometheus 7 test and does a negative test rule out IBD?

Dr. Isaacs:
The Prometheus 7 serology panel looks at antibodies to a number of bacterial antigens. Many of these antibodies tend to be elevated in inflammatory bowel disease. Small bowel disease associated with Crohn's disease tends to be associated with higher levels. Unfortunately the panel lacks the sensitivity and specificity to be used as a routine diagnostic test. This test may prove to be helpful in classifying a more aggressive disease course. In one pediatric study the sensitivity and specificity of the serology panel was 67% And 76%. The negative predictive value – which means that if the test is negative – there is no disease - was 79% which means that 21% of patients with a negative test had inflammatory bowel disease. In your case patients with colonic disease have a higher percentage of negative antibodies. This does not mean you don't have Crohn's disease – it is much more important to go with all the other factors including symptoms, clinical course and endoscopic/radiologic changes that are consistent with IBD.

Pediatrics (2010) 125:1230-1236

Question:
I have had Crohn's disease for many years and have been experiencing extreme pain in the right lower quadrant as well as my usual diarrhea. A colleague suggested that I do a colon cleanse with herbal products that are supposedly safe. I am wondering if it is safe given my history? I have been maintaining remission with Asacol and several other medications (have been on immunomodulators in the past but not currently). Should I try this colon cleanse?

Dr. Isaacs:
Extreme right lower quadrant pain with diarrhea may mean the disease is not in remission right now and should be further evaluated. In general I would recommend staying away from "colon cleanse" with herbal products. Many of the herbal products are unregulated meaning that the actual ingredients are not known. If you have active inflammation – certain products may make symptoms worse. Some of the complementary and alternative agents for therapy are being examined in IBD and may play a role as adjunctive therapies – Keep your eye out for the results from some of these studies.

Question:
I have been dealing with narrowing of my J pouch. I have tried different medications and dilatation. I think I am going to need another surgery, but the last surgeon was afraid to do a pouch revision. Are pouch revisions common? Why would a doctor want to avoid doing this surgery?

Dr. Isaacs:
J pouch narrowing is one of the complications of this type of surgery. You can get narrowing either at the anal opening – where the pouch attaches to the sphincter area or at the entry into the pouch or at the site where the ostomy take down was located. It is important to make sure that the narrowing is not due to Crohn's disease of the pouch. If there is active inflammation it needs to be treated prior to consideration of surgery. If surgery is needed it is important to go to a surgeon who has extensive experience with J pouch surgery. These surgeons are likely to be the most comfortable with trying to revise and save the pouch. Sometimes due to the anatomy of the pouch, ongoing inflammation and scarring it is not possible to revise the pouch and the main surgical option available at that point is removal of the pouch and creation of an end-ileostomy.

Question:
With the data suggesting increased risk of polyps in the general population on folic acid, do you now not suggest using folic acid to prevent dysplasia in the IBD population?

Dr. Isaacs:
The data on folate to prevent dysplasia is not clear cut. There have been both positive and negative studies. Our main goal in prevention of dysplasia at this time is to make sure therapy is maximized to get histologic (on the microscope slide) and endoscopic (visual) healing. We don't always get there but there is increasing evidence that inflammation may increase dysplasia risk. In terms of folate it is important to supplement with folate if you are taking sulfasalazine or methotrexate – as these two agents interfere with folate.

Question:
My 22 year old son has suffered from Crohn's without relief since his diagnosis 18 months ago. He has been on almost all the medications available with no success. Recently he had a colonoscopy which showed some healing. Remicade may be helping. His main issue has been pain. He has been on pain medication for about a year, and the dose is getting rather high. My question is whether there are many other Crohn's patients who suffer such great pain and are required to be on high doses of pain medication?

Dr. Isaacs:
This is a complicated problem. We really try to minimize pain medication in patients with Crohn's disease. Use of narcotic pain medication is associated with increased complications. There are situations where pain medication is needed such as after surgery and with abscesses while the complication is being managed. The pattern of response to pain medication that you relate raises the question of narcotic bowel syndrome. With narcotic bowel syndrome patients require higher and higher doses of pain medication – that only gives transient relief. It is actually the narcotics that are making the pain worse.

In patients with narcotic bowel syndrome – detoxification from narcotics is recommended. This can be done in an inpatient or outpatient setting. It would be important to have your son address this possibility with his physician.

Grunkemeier et al Clin Gastroenterol Hepatol (2007) 5:1126-1139

Question:
I am thinking about traveling on an airplane for a nine hour trip. Are there any special bathroom privileges given to people with Crohn's disease?

Dr. Isaacs:
If you go to the My IBD website myibd.org you can order a medical alert restroom access pass that may help you with the restroom line. You may also wish to speak to the flight attendants to let them know of your situation – you can show them the restroom card. Try to avoid your bowel movement triggers on your trip and if your are on anti-diarrheal medications – adjust the timing so you have maximal activity during the times you cannot get to the restroom – take off and landing.

Question:
I have been taking Asacol for at least 9 years, have had UC for 15. I always see the Asacol pill in my stool. I switched to the 800 mg pills last year, six a day. Is this something I should be concerned about?

Dr. Isaacs:
If the medication is working for you I would not be overly concerned. The coating on the Asacol dissolves as it moves into the ileum and colon. As things get less acidic the coating starts to dissolve. The entire coating does not need to dissolve for the drug to be released. Often you will see the pill with one end "blown out". When part of the pill opens up the drug is released into the intestine. If you are not getting results from your Asacol and the pills coming out are completely intact – nothing from the coating missing then you may not be getting as much benefit as you could from the medication. If that is the case, there are alternative medications that deliver the active ingredient (mesalamine) in ways that do not depend on the medication coat being dissolved.

Question:
I am a 20 year old female with a 7 year history of moderate Crohn's which is basically under control with Imuran. The problem is I have chronic nausea. I have split my 50 mg dose and tried snacking throughout the day without any relief. Any suggestions?

Dr. Isaacs:
I would recommend making sure 1st that the nausea is coming from the Imuran. If you stop the Imuran for several days does the nausea go completely away?? If it does then most likely the nausea is related to the drug. You might try an alternative preparation of the Imuran – ei brand or generic depending on what you are on to see if that helps. Imuran is broken down to 6-Mercaptopurine and works through the same pathway. Some people have fewer side effect on the 6-MP than the Imuran. The opposite is also true. You may want to ask your doctor about trying these maneuvers. Sometimes it will also help to take an anti-nausea medication with the Imuran. If none of this works you may need to switch to an alternative class of medication for your Crohn's disease.

Question:
I was diagnosed with Crohn's 30 years ago and have had two surgeries. The last one was to remove a stricture at the site of the anastomosis caused by scar tissue. Recently I have been having pain and symptoms that lead me to believe there is inflammation at the site again. I have been told I cannot take Remicade or 6MP any longer, and have been on sulfasalazine for the past three years. Humira is my only option. I don't want to build up more scar tissue and have another surgery. Can it be prevented?

Dr. Isaacs:
Inflammation at the anastomosis if uncontrolled can lead to progressive problems and stricture formation. The key here is to minimize the inflammation. Humira can treat active inflammation. With your history of 2 surgeries due to stricturing at the anastomosis it would be reasonable to make sure that the Humira or alternative medication is actually doing what it is supposed to be doing by looking at the anastomosis after a period of time on the medication. Once there is fibrosis (scar tissue) and no inflammation there are no medications that we currently have to treat fibrosis. At that point the options for treatment are dilation of the stricture with a balloon through a colonoscopy or surgical therapy.