Treatment for an Incurable IBD: Interview with a Crohn's Patient

This is the third in a series of articles based on an interview with a Crohn's patient. It is our hope that in exploring different aspects of Crohn's and other IBD's it will heighten awareness and understanding of IBD's.

In this interview we focus on the treatments of Crohn's, including side effects and insurance considerations. I think you will find this particular article enlightening in a nuymber of ways.

Thank you for sharing so openly with our readers about Crohn's, the IBD that you have lived with for many years. The diagnoses of Crohn's seem to be increasing.

It is one of increasingly identified autoimmune diseases that many people know little or nothing about, but we are learning. Your participation in this four part interview has been tremendously enlightening.

Crohn's is a complex condition. It presents in similar and different ways. Some patients are just learning to cope with Crohn's and learning to live with it, or other IBD's. The same is true of Colitis.

There are many stages of the disease and a variety of treatments. With your permission, I'd like to discuss current treatments and continuing research in the area of Crohn's. Rather than just disseminate information. We'd like to know how treatment and research impacts the lives of those with IBD.

Q. What is the current course of treatment for Crohn's?

A. The first thing your doctor will want to do is keep the IBD under control. The object of living with IBD, or Crohn's, becomes keeping inflammation at bay. To control inflammation most doctors start using 5-ASA agents, such as Asacol, Dipentum, or Pentasa. Possible side of these mesalamine preparations include nausea, vomiting, hearburn, diarrhea, and headache.

If 5ASA's don't work they will then try cortosteriods like prednisone and endocort. Cortosteriods help reduce inflammation.

Immuran and 6 MP are immuno-suppressants. They work by blocking the immune reactions to inflammation. A lot of times the doctors use these drugs along with cortosteroids to enhance the effectiveness of the cortosteroids.

Because of a compromised immune system, it is not uncommon for bacteria, present in everyone's intestines, to proliferate in my intestines. When this happens it has the potential to make me deathly ill, literally. The severe infection and inflammation of the intestines can become absorbed in the blood stream resulting in a blood infection.

My doctor uses Flagyl and Cipro, these are a couple of the most powerful antibiotics available. Usually an intense course of antibiotics will kill the overgrowth of bacteria in my intestines.

Other antibiotics might work, but there are the only two I can take due allergies. I'm allergic to penicillin and eurythramaicin.

Another treatment to keep Crohn's from flaring-up is the use of anti-inflammitory drugs that have been discovered for the treatment of RA. Two approved treatments for Crohn's, at this time, include Remicade and Humira.

Q. What is your current course of treatment and why, to the best of your understanding, this is the treatment your doctor has chosen?

A. I am currently on Remicade. I go into the gastroenterologist's office every five weeks. I also take Entocort three times a day. It is supposed to help with inflammation. Entocort is a Cortosteroid like prednisone without the side effects of prednisone. I also keep phenergin on hand for nausea and Percocet to help control pain.

Q. Based on your answers, it sounds like, despite your treatment, you deal with a lot of inflammation and pain.

A. Don't get me wrong. The meds help and mine is an advanced and aggressive IBD. Not everyone with Crohn's has flare-ups as often as I do. A lot of it has to do with the individual, stress management, and other environmental factors.

There are Crohn's patients I know who may have flare-ups once a year or once every two or three years.

Staying in good health, active, and taking meds on a regular basis definitely helps keep IBD's under control.

One thing I should say at this point is that smoking tends to make it difficult to keep Crohn's in remission. On the other hand, this might surprise you, but smoking seems to be help colitis. No one really understands how that works, but I've heard it so many times, it seems like anyone with an IBD, Crohn's, or Colitis needs to know this.

Q. Are there other treatment options of which you are aware?

A. Humira has been approved for the treatment of Crohn's. That is an exciting development. Remicade has lost a little of its punch for me. It still works, but doesn't seem to work as well as it did when I first started the infusions.

I would try Humira but at the moment my insurance will not pay for Humira. It would be about five thousand dollars cheaper than the Remicade treatments.

The difference between Remicade and Humira is that Remicade contains a live mouse protein and The Humira does not. Remicade must be administered by a doctor or nurse as it also has some type of chemo in it. It has to be administered by infusion into the bloodstream.

Humira is a self administered drug. You give yourself a shot every other week. It is administered from the pharmacist in a self-administering pen.

Humira is about five thousand dollars for a one month supply verses ten thousand dollars for the dosage of Remicade I receive every five weeks.

I wanted to switch to Humira, but my insurance company said they would not pay for Humira because it is self administered.

Q. So you are telling us that the insurance company, not the doctor has the final say in your treatment?

A. I don't think that someone [the insurance company] that is not involved in my care should be making decisions on my behalf, but what can I do? They pay the bills, which, as you can see are outrageous. So, I'm at their mercy.

Sure, the doctor and I are the ones who know me and know what is best for me, but yes, the insurance company makes a decision that costs them more money. It doesn't make any sense. It hinders my care.

Q. I'm stunned by the Humira issue.

A. I am too. It's all bureaucracy. I have talked to several people at United Healthcare, but even though they could save money, I can't seem to get to anyone who follows the logic, or who is at least willing to work with me. Rules are rules, is the impression I get. It just doesn't make sense. But, I can't shop for insurance. I have a chronic illness. What am I to do?

Q. Thank you for sharing that. It must be very frustrating. Let's move along a bit. We've talked about the course of treatment to try to keep Crohn's in remission. However, despite your best efforts there can be a flare-up. When you are hospitalized how do they treat you?

A. When I go to the hospital there are several things that usually happen right away. First, they want a CT and/or x-ray of my abdomen. There is always the risk of a blockage. That has to be ruled out, and any areas that have thickened in my intestines are compared to previous visits. Of course, the result of the CT determines the treatment.

Unfortunately the CT usually makes things worse before they get better. I have to drink a barium solution, flavored fake banana, a few hours before the CT and usually again immediately before the CT. The barium is radioactive which allows them to watch the barium move through the intestines. This shows them if there is a blockage or fistula anywhere in the intestines.

They also want to let my intestines rest, so they hook up intravenous TPN. TPN is an infusion of nutrients and lipids.

The odd thing is they want my bowels to rest, but by this point they are full of barium. It is difficult to pass on a good day. Add inflamed bowels, a restricted diet, and pain meds and I usually spend extra time in the hospital because the barium will not move. It isn't pleasant to talk about but that is the way it works.

Q. Honestly, it sounds more painful than anything.

A. It is painful.

Anyway, they keep me from eating anything, so my bowels have to rest and heal.

When I'm on TPN they monitor my blood sugar closely because of the direct infusion of nutrients and calories.

The severity of the inflammation determines how long anyone is on TPN. Once the doctor and I determine that I'm ready, they gradually introduce liquids into my diet, and from there we progress to soft foods.

Once I'm able to tolerate soft foods, I'm usually released from the hospital. It is a predictable routine, unless there is an unforeseen problem.

Q. Do you think this routine will one day change? In other words, where do we stand in terms of research and the future of Crohn's and IBD's? What do you expect from the future?

A. With awareness of Crohn's becoming more prevalent I am hoping that research funds will continue to grow. Research and experimentation is on-going. Once you have Crohn's or other IBD's the symptoms become convoluted. It becomes difficult to tell what is a symptom of the disease is and what is a reaction to medication. Managing the disease and completing research is difficult. There are lots of correlations to bowel diseases, but causes are hard to pinpoint. There are a few ideas on the table right now.

Until a cure is found, Crohn's patients need to be aware of things that trigger a flare-up and try to avoid them. The more flare-ups you have, the more scar tissue you develop. Each time you have a flare-up you move closer and closer to a blockage.

I am hoping that I will not have any more surgeries and a cure will be found. Surgery should be a last resort. When you have healthy intestines it sounds like they go on forever. Reality sets in when you have an IBD. You only have so much intestine to lose.

Repeated flare-ups and surgeries and you can end up with a colostomy for life.

Q. What is the best source of information to find out more about Crohn's and other IBD's?

A. The Internet is your best friend when it comes to information about Crohn's disease, symptoms, and treatments. Forums are a great resource because you can interact with others who are in various stages of the disease. Some of the forums and websites I visit are Healingwell.com, CCFA.com, Mayoclinic.org/crohns, crohnsforum.com.

Thank you for your time and for sharing this valuable information.

If you have IBS or other symptoms of an IBD contact a gastroenterologist. Keep a log of your symptoms, including what you eat, your elimination habits, pain, and related issues. This will be helpful for the doctor in determining what type of IBD with which you may be dealing.

(We discuss other aspects of IBD in additional articles. Please check my content page for related articles if related links are not listed. Click on the "By Lenora Murdock" button at the top of the article.)