Dear Neighbors,

A long time ago, we used to refer to people who came in to the office as patients. Somehow, physicians became health care providers. Even worse, patients became clients. Yikes! To quote the old band Chicago, I was walking down the street one day when a man came up to me and asked the time of day. Simultaneously, we realized that I was his doctor and he was my patient. More importantly, I realized that he was my neighbor. As such, I refer to my patients as my neighbors.

Maybe I’m naïve but I think when neighbors give you advice about your health, they have good intentions. Unfortunately, they may not have good information. The purpose of this column is to help our neighbors by providing good information. There are no right answers. There are different approaches to try to reach the same goal: wellness. Without good health, one can never begin the adventure of Jefferson’s America: the pursuit of happiness.

So here goes:

Question:
I am only taking Asacol, about eight pills each day. Would this be enough or do I need to take enemas as well? I found Colocort, (steroid based), worked better than Rowasa. What do you recommend?

Dr. Fleisher:
Great question! Steroid enemas are effective but I would try to avoid chronic steroids in any form because there may be some systemic absorption. When a steroid is adsorbed into your body it has the potential to lead to side effects including but not necessarily limited to cataracts, bone demineralization (osteopenia and osteoporosis) and problems with blood sugars. Sure sounds like a lot of trouble from a little enema but to quote my son when he was seven “but it’s possible!” So much for the chronic use of any steroid.

Asacol is more commonly used as two pills three times a day to four pills three times daily. There has been some experience with Asacol used as 4 pills twice daily to increase compliance and adherence rates. That sounds fine. In a patient with ulcerative colitis, I would continue this drug in order to decrease your risk for colon cancer.

If you are not in remission, the addition of a 5ASA suppository has been shown to increase the likelihood of remission. In essence, if you’re doing well, the pills should be continued. If you’re not, the addition of a 5ASA suppository is a good idea. I tend to prefer suppositories over enemas because of ease of administration. You may feel the opposite and to quote Seinfeld “not that there’s anything wrong with that!” The degree of response to Colocort and Rowasa will vary from patient to patient. Trial and error will decide which to use.

Question:
I had been on Remicade for 16 months and was taken off because I started to get severe muscle pain. The Remicade seemed to help a little but I was ending up going for treatments every 5 weeks, so it was stopped. I still have severe muscle pain that swells, turns red, full of heat and very painful. I have been off Remicade now for 6 months and all my arthritis tests are negative. What is causing this and is there anything I can do for relief?

Dr. Fleisher:
You mention arthritis tests so let’s talk a bit about joints. Sometimes people get joint pains because they are tapering off their steroids. As you taper, your joints can become excruciatingly painful but it resolves over time. Sometimes people develop joint pains as an extra-intestinal (outside the gastrointestinal tract) manifestation of their IBD. As their IBD is about to worsen, their joint pains tend to precede or parallel their disease activity. Sometimes medications cause joint pains. Patients receiving Remicade may develop Delayed Type Hypersensitivity Reactions. In essence, antibodies to the infliximab form and side effects such as joint pains ensue. This is more common in patients who receive episodic therapy (i.e. “I took Remicade three years ago, did well. I stopped it and now I flared so I restarted it.  However, DTH can occur with episodic therapy. Lastly, is it possible that you did well with Remicade but developed a DTH and the drug was stopped?

Let’s revisit your case. You did well but then developed severe pains. Actually it sounds as if you were developing antibodies to infliximab. These antibodies make the drug less effective and you end up requiring it more frequently and in higher doses. Perhaps your Crohn’s is the culprit. It sounds like you need to have your Crohn’s restaged. If it is active, then the pains are from your IBD. Considerations regarding immunotherapy (6 MP/ azathioprine or methotrexate) are appropriate. Humira has been shown to be a well tolerated and effective biologic drug in patients who could not tolerate or lost response to Remicade.

Question:
My husband was diagnosed with UC approximately 3 years ago. He has had a very short time of remission with "always some blood”, when not producing stool with significant blood and mucous. He has been on 6MP with a dose increase since last June. He became extremely weak and was diagnosed with anemia. His HCT was 16 and WBC was 1.68. He received transfusions with HCT rising to 24 and WBC about the same on the next day. When should he be tested for bone marrow toxicity? How long should it take for HCT and WBC to stabilize or return to "normal" levels? Should he go back on 6MP without a toxicity test?

Dr. Fleisher:
6MP is metabolized (broken down) to an active agent called 6TG. There is an enzyme called TPMT that shunts the breakdown towards 6MMP and away from 6TG.  If there is not enough TPMT activity, you will form too much 6TG. If there is too much 6TG formation, you can develop bone marrow suppression and perilously low counts. It may take a few months for the WBC to climb back up.  Prior to restarting 6MP, which is an excellent drug, I would recheck TMPT levels and see how the patient metabolizes the drug and if restarting it at a lower dose is safe. If it is, recheck the labs every two weeks for a few months and then quarterly when on a stable dose. Lastly, I never like my patients to walk around anemic. Give him iron and/or blood. He’ll feel better.

Question:
My daughter had a positive biopsy for UC but a negative serology test from Prometheus Labs. Could the medications she was taking cause this? She was on Lialda and Entocort at the time of the blood test.

Dr. Fleisher:
There is no definitive finding on a biopsy that proves the patient has ulcerative colitis, rather the biopsy is compatible with ulcerative colitis. Serological tests are also not 100% accurate and just suggest what type of colitis the patient is suffering from. Medicines do not affect the blood serologies. Entocort is not approved for ulcerative colitis, only Crohn’s disease.

Question:
I was diagnosed with UC four years ago. Infliximab was the medication that finally put me in remission. Since then I have found further relief and have managed to quit taking some of the medication with the Simple Carbohydrate Diet. What is your opinion of this diet and how come it is not more widely recommended to people with IBD since it can provide such a drastic increase in quality of life?

Dr. Fleisher:
Oh how I wish it were so! I would love to tell my patients that if they just ate a mango, it would all go away. Unfortunately, complex problems are not solved by merely avoiding complex carbohydrates. No studies have shown that diet plays a major role in IBD therapy. While the Simple Carbohydrate Diet may be effective for some patients at controlling some of their symptoms, it does not work for every patient. 

Perhaps, you were able to discard other therapies after initiating biologic therapy.  Infliximab is not merely a steroid-sparing agent, but also a 5ASA sparing agent in Crohn’s disease. However, I would not discard the 5ASA product in ulcerative colitis. Even if the 5ASA did not put you into remission, 5ASA products have been shown to decrease the risk of cancer in ulcerative colitis. More importantly, I’m happy to hear you’re doing well. Keep up the good work!

Question:
I have a history of Crohn's, probably had it all my life. I will be 50 years young very soon... I have had 3 small bowel resections and now have the short gut thing going on. I know how important is to stay hydrated. The problem now is can I drink water when it just exacerbates the watery bowl movements that I experience each day?

Dr. Fleisher:
The exact diagnosis for your condition must be determined. Perhaps after three resections you have a short bowel syndrome, or recurrent Crohn’s disease or bacterial overgrowth. Various tests should be performed by your doctorsuch as a small bowel follow through to determine which might be causing your watery BMs.

In essence, with your high rate of relapse and recidivism, make sure the watery BMs are not active Crohn’s. If your Crohn’s isn’t active then you can discuss therapies such as cholestyramine, anti-diarrheals and sandostatin with your physician.

Question:
My wife has UC but has been told by her consultant that she is allergic to mesalamine; she gets diarrhea. She has also tried azathioprine but this caused her white blood cell to drop too low and she felt quite unwell. Her only alternative now is to take Prednisone when she flares as her colitis extends throughout her colon and she has severe flare-ups. Do you think she would be able to tolerate other maintenance medications such as sulfasalazine or olsalazine?

Dr. Fleisher:
Steroids are not your wife’s only alternative.  You mentioned she was allergic to mesalamine which is very uncommon. It could be the type of mesalamine agent that caused the problems.  Therefore, she should be rechallenged with another mesalamine agent. Also, the low white count seen with Azathiaprine is dose related and she may be able to tolerate lower dosages. Finally, Infiximab has been shown to be effective in about two-thirds of ulcerative colitis patients.

Question:
I have had UC for more than 30 years. I have been in what my doctor calls "semi-remission" for several years. I have 2-4 bowel movements per day and they are quite watery, but no bleeding, I take 12 Colazal per day plus an enema at night. I can't decide if I should go on 6MP and my doctor says it is my decision. In light of lymphomas, what would you recommend?

Dr. Fleisher:
Colazal is commonly used as three pills thrice daily or four pills twice daily. Twelve pills is a bit much and the dose should be lowered to see if the diarrhea improves. 

6MP has been used for decades now to successfully treat UC. There was a Meta analysis (pooled data),which noted a slightly increased risk of lymphoma in patients using an immunosuppressive. If colonoscopy shows inflammation and your symptoms are diminishing the quality of your life, then starting 6MP is a good alternative that will not significantly increase your risk of lymphomas and/or cancer.