STEVE'S CROHN'S PAGE--MY STORY

My name is Steve. I am a 47 year old, white male currently living in Dallas, Texas. I am a Licensed Professional Counselor working in private practice with individuals with a variety of different problems in their life. I am very lucky to be married to Beverly for the last 18 years and she has been a constant help with my fight against this disease. I owe her a great deal of gratitude for being the caregiver and the support system she has too often been.

I was living in New Orleans in the spring of 1976, enjoying the food and beverages that are abundant in the Crescent City. I began to have some minor pain in my lower stomach, a "touch" of diahrrea, and to lose weight. Being stoic and having a high pain threshold, I thought this would pass. My father had died in January and I assumed I was going through a period of stress that was causing these symptoms. The pain grew more acute, the diahrrea a constant, and now I was having trouble keeping food down.
Fearing the symptoms were caused by stomach cancer or something worse, I went to Oschner Hospital in New Orleans. I was put through a battery of tests, which included an upper and lower GI series, a rigid sigmoidoscopy, and lots of lab work. I was informed they could not find anything wrong and wanted to repeat the tests. And so we did. Afterwards I was led into a Doctor's office and an elderly physician said they still had found nothing wrong. I was asked a series a questions about recent stressors. Upon hearing of my father's death and that I worked on the adolescent unit of an inpatient psychiatric hospital, I was assured THAT was the problem and I needed to take a leave of absence from my job. I arranged a leave of absence and sat around being sick for two more months with all the symptoms increasing. By this time I had lost from 198 lbs. down to 149 lbs.
I arranged to come back to my mother's house and go to Parkland Hospital in Dallas, Texas. The tests were again run, this time by the gastoenterologist seeing me in the free clinic. The Doctors found my "nervous stomach" was Crohn's disease, something I had never heard of. With the help of the doctors, the Crohn's was gotten under control through the use of medications. Over the last 22 years I have had "flare ups" (too many to count), while managing to only have one surgery, the removal of 3 feet of intestine and a bowel resection in 1996. I made it one year without any signs of Crohn's until June of 1997 when I had an acute flare up and landed in the hospital.

As I write this it is the end of January 1998 and I am having some slight discomfort, but not a flare up. My current drug regimen consists of 12 Pentasa per day(250 mg.each), an alternating antibiotic (currently on Cipro), and 6 Colestid a day (1 gram per pill). The Colestid is to help in formation of stool. I have been off prednisone for about a month. I try to eat a diet that is high in protein and low residue, but living in Texas, surrounded by Mexican dishes, barbecue, and steak, it is sometimes hard to stay on the healthiest diet for someone with Crohn's. I am usually able to tolerate those dishes if I do not have it regularly. There are foods that I stay away from at all times, such as pepper, popcorn, any nuts, hot sauces (well, maybe some with my gumbo), and anything that has a sesame or poppy seed on, in, or near it! I have been under the care of a terrific gastroenterologist, Dr. Michael Allen, for the last 20 years and do not think I could find a better physician. With the influx of managed care came my Primary Care Physician, Dr. Madeley who has been most cooperative in referring to Dr. Allen to help deal with the Crohn's.

UPDATE

It is now, Thanksgiving of 1998 and it turned out to be a busy year. I had a flare up in June of 1998 and was put on prednisone. I was tapered off the medicines fairly quickly and was off medicines by the end of July. I began to feel bad again at the end of August. I began my medicines again, but realized within a week that something was different this time. I wasn't having the usual good response to the prednisone I usually had. Noting this, I tapered off the medicines as fast as possible. Within a couple of weeks I was sick and had to see my GI doctor. After a few tests, he placed me in the hospital in October of this year. I was in the hospital for 9 days. On the second day in the hospital, I was approved by the insurance company for an infusion of the new drug, REMICADE. It has been 5 weeks since the infusion and I am still having some problems with my Crohn's, while still being on 40 mg. of prednisone. At this time, I would have to say there was little response to the Remicade. I am scheduled for a GI series the week after Thanksgiving. This will allow Dr. Allen to have a complete look at the intestine so he can accurately map the active Crohn's, look for any narrowings, and look for any partial obstructions. This will allow for future treatment planning as there seems to be a change in the disease or my resistance to it by using steroids.

UPDATE...Surgery, February, 1999.

The GI series was performed the week after Thanksgiving and it showed active Crohn's in my small intestine, along with a stricture of a few inches. After long talks with my doctor, my surgeon, and my wife, I decided to have another bowel resection in Feb. of 1999. On Feb. 17th, I checked into the hospital and was sick when I checked in. I had a migraine headache (probably from going without food and then cleaning out my body) and was nauseous for hours before the surgery. The surgery was originally scheduled for 1:30 and I was taken into surgery around 4:30 that afternoon...part of having a good surgeon is waiting because he is doing it right for someone else. I just wanted something to stop the pain and sickness. When I awoke and could remember again, the doc told me everything looked good. They had removed another 20 inches of small intestine, but he did not see any involvement of the colon. After feeling good and then bottoming out for a few days, I began to feel I was going to make it. I stayed in the hospital for 8 days, leaving the unit on Thursday, Feb. 25th. This surgery seemed harder than the first in the manner that I have been recovering. The healing process has seemed to take longer. The doctor assures me it is normal, since this is the second surgery in the same spot, with the patient being a couple of years older. I still need pain medication to relieve the pain at the wound site, but less than I have in the last 2 weeks. Hopefully, this surgery will be the last I need as the search for a "cure" looms closer. Thanks, again, to Dr. Lichliter, my surgeon...Dr. Allen, my gastroenterologist, ..and Dr. Madeley, my primary care physician...or as we said in the "old days", the family doctor. These doctors made time to see me and be available for any questions every day.

UPDATE...one year later...February, 2000.
It has been almost a year since the 2nd resection. Unfortunately, it has not been a stand out year for me. I continued having pain after the surgery and finally spiked a high fever, vomiting, all the symptoms of something terribly wrong. I was readmitted to the hospital and an abscess was found. They tried treating the abscess in the hospital without changing the diet, then tried to change the diet. I was released and was back in the hospital within a week. This time they also found two fistulas had formed....one, between the abscess and the bowel and another between the abscess and the stomach. This meant they had to place a drain in my side and a triple lumen catheter in the clavicle area. I was sent home with a schedule of 3 IV's a day of antibiotics, a 4 hour IV of hydration, and a 12 hour TPN feeding during the night. I was having dye studies done regularly to measure the progress. I finally had another infusion of Remicade which may have helped close the last fistula. The drain was removed and the catheter pulled. However, the pain did not go away. I tried acupuncture and it seemed to help for a little while (hours). I was using other pain management techniques, including large amounts of drugs like Neuronton, 2 antidepressants, and Celebrex, without relief. By this time the doctor decided I had abdominal wall pain due to the surgery and all the trauma that was created in cutting a drain, having an abscess, etc. I kept telling them it sure felt like the pain I had during an active flare up, but was always told it was too soon after the surgery to be an active flare up. I went in to see my gastro doctor about starting me on a pain patch. He mentioned he had an opening in his colonoscopy schedule on Monday (this was on a Friday). I agreed to have the "scope" done and cleaned myself out the next 3 nights. On Monday, I felt terrible, so it was a blessing to get anesthetized. After the scope, the doctor came in and told me I DID have active Crohn's disease and put me in the hospital overnight and started me back on my steroids. In the year 1999, I was in the hospital a total of 7 times. As soon as we tapered the prednisone to less than 30 mg. the pain and flare up seems to start up. I ended up in the hospital at the end of January of 2000 with a viral infection which I seemed to feel in my back. I am back at home, still on pain meds and trying a medicine called CellCept. While in the hospital, I received another infusion of Remicade. It seems to have helped with the bowel movements (less often and firmer stool). It has had little impact on the pain, though. It gets hard to go through all this at times, and then I get an e-mail from someone who has read this or just been diagnosed, or has been fighting it longer and maybe even more severely than myself, and it puts everything back into perspective. Thanks to everyone for reading, writing, caring, all those things this page rewards me.

UPDATE....April 2001. Well, another year has come and gone and little has changed except the language used and the feelings of my doctors about my pain medications. While there is also some concern still expressed about the pain itself, the doctors seem to be more worried about why they can't make the pain stop so let's stop the pain medications or hand them off to someone else. I don't mean to sound angry, but it feels like all my doctors don't understand the relationship of pain and Crohn's. Pain is a symptom of the disease itself and from my experiences as well as from the people I hear from, it has the ability to be the main symptom. After being in the hospital for numerous times again in 2000-2001...so many times, they put a port-a-cath, in me because they had used all the veins and I was an almost impossible stick, I decided to try the pain management of getting a block on the nerves as they entered the back. It was something called the Splanchic nerve block. I got a treatment to see if it would work before they "burned" the nerves. Anyway, the procedure hurt like all get out and has not worked. As a matter of fact, I am having more pain in the back area!! LOL I have my own theory as to what is going on...after 26 years, they have ran out of things to try. I have done everything the docs asked and things holistic on my own. The doctor (gastro) calls this Refractory Crohn's and doesn't expect me to ever have a time period where it goes into a remission....maybe surgery, but as a last resort...so maybe it is time for all of us to get on the same page and just treat how I feel not how they hope I will someday feel, again.

I must apologize to all the fantastic people I heard from in the last few months and have not been able to get back to you. Answering the e-mails has been very hard unless it was a fast response item. I do not know if I will get to all the responses but know I read and cherish every e-mail and guest book signing. I do encourage everyone that reads this to write your drug company, insurance, doctor, anyone that will realize our plight as a community. Also, I don't care what the doctors think....I know I feel pain, it is real, and not abdominal wall pain. I don't ask the doctors for some wild prescription benefit. Just be responsive to MY pain. So to those that suffer from pain, keep yelling about it so they have a way to measure the pain as a leading syndrome. I apologize for the slow response to UPDATE and will try to make it more frequent. Your patience is so appreciated. As to those that have asked I am currently on 30 mg of prednisone (I am being told I am steroid dependent also....I can't get below 30 mg without beginning to feel real bad. We are going to try Budnes., the drug we are ordering from Canada. My gastro doc also is keeping me on an 8 week course of Remicade as a maintenance drug. I really think I feel a small help for 2 to 3 days after the infusion until about 3-4 weeks after, however, the pain doesn't stop, but it lessens and the feeling of just not wanting to do anything is better. The bowel movements are somewhat better. My pain doctor has put me on a strong pain medication, which seems to be a help, It is a drug that constipates badly so I must be careful. I am also doing TPN at night until the first of May to give my stomach bowel rest for the last 5 weeks. They started me in the hospital and we are going until next Tuesday. I have been faithful, in that I have not eaten anything orally so I hope the food does good when I do start eating. Keep in touch and know I am reading all the letters and notes. My thoughts are with all of us.

UPDATE...AUGUST, 2002....I apologize for the length of time between these updates, but some of it has been because of the fact that nothing has changed. I am in a state of a constant flare up at this point in time and do not expect to get much better. I went to the gastro doctor last week and after he listened to the med regimen I watched his frustration as there was nothing else he could think of to try. I had an intensification of all my symptoms last week and went from 25 mg. of prednisone to 50 mg. of prednisone to try to ease some of the symptoms. So far it has been slow to respond. The doctor is worrying now about the effect of the steroids on my bones. I went for a bone density scan last month, but haven't heard anything yet. The last time I had the scan was in 2001 and my bone density in my hip was 81%. He is afraid I am going to end up having a joint replaced if something doesn't change. I must say a lot has happened since my last update. I have twice had reactions to medications while in the hospital. I had them both times when my doctor was out of town and his rounds were being covered by another doctor. One time, the doctor added a muscle relaxant to my meds without saying a word to me. I believe the drug was something called Mysclarin. Woke up out of my head...hallucinating and disorderly. The next time was when a covering physician ordered breathing treatments and added something to it. Again, woke up out of my head and had to be put on a heart monitor, also. I did get better after a while and was released from the hospital, but still in flare up. Last fall all hell broke loose around here. My mother was diagnosed with 3 forms of cancer and eventually passed away at the first of December. I had to deal with having her put in the hospital on a hospice wing and watch her slowly die. The emotional hell had my gut feeling like a solid bundle of raw nerves tied in knots. I made it through the holidays and then was hit with what I thought was my worst flare up yet. I went to the hospital for awhile and then was released to home. I was home for about 10 days and then woke up in the hospital, again. The only problem was, I had lost 3 days from my life. I awoke in ICU and in restraints. It seems I went to sleep and woke up out of my head. My wife had to call 911 to get help with my wild behavior. They took me by ambulance to one hospital and transferred me the next evening to my regular hospital. I remember none of this. When I finally gained a little mental stability, I was told I had delirium and they didn't know why. I was in the hospital for 32 days while they tried to find out what was going on. They said that it was more than just Crohn's and at one time or another I had a dangerously low blood platelet count (was told it was the lowest my docs had ever seen). I also got a contaminated port while in the hospital and had to go through a 3 day protocol to clear the contamination. They never found where or how I was losing blood, but I required 4 transfusions of blood. In that time period I was still not quite right mentally so they were also treating my mental state. I developed a case of bacteria in the blood for which they never found a reason. There was a whole lot of new doctors coming to my room daily....nephrologists, immunologists, hemotologists, psychiatrist, neurologist, opthamologist etc. I had about every test a person could have. They did biopsies and scans and other tests I have never heard of. They tested me for something called Wilsons disease that has an effect on the eyes. My gastro doctor, at one time, said I had an infection induced delirium caused by pneumonia. I had been taking a drug called Thioguinine, but was taken off because I was swollen all over and bruises were popping up all over my body. It didn't help with either problem. I had developed intense pain in my wrists and forearms. They looked at that through atomic imaging.....found nothing so it was called reflexive pain from the Crohn's. They checked and found no arthritis. I had a colonoscopy and endoscopy and found few polyps but they were benign....just Crohn's they said. JUST CROHN'S!! More tests revealed I had a low potassium level so again I was put on a heart monitor. They did a spinal tap to test for meningitis....found nothing. Bone marrow tests showed I was producing red blood cells. They did a liver biopsy looking for possible cirrohsis and found nothing. They did find I had a high ammonia level, but never found out why. I had a rash all the time I was in the hospital and they never found out why. During all of these tests and the hospitalization I was never quite right mentally, but was finally allowed to come home. I said allowed for a reason. At some point during my hospitalization, I began to feel like I was going crazy from all the tests and because I felt I had no control over any part of my life. I threatened to leave the hospital and was told by my doctor he would not allow that to happen. Every day I would awake to another battery of tests and get that same answer...."nope, that is not it". All I could do was lay there and begin to cry and wonder if I would ever get out. I blamed my doctors and my wife for keeping me there. I guess I am trying to say the mental, emotional, and psychological states were almost as hard on me as the disease itself. I believe it was finally blamed on medicine toxicity. I quit taking Remicade, because I didn't think it was doing any good and the doc agreed. In the last year or two I had tried Remicade, methotrexate shots, budesinine from Canada, Thioguinine, CellCept, and different doses of other maintenance drugs. I believe my body became toxic and they were unable to find that something that was causing the sepsis. This is from having Crohn's for such a long time and looking for that elusive "cure". I am at home going through another pretty severe flare up and I am scared to death to allow myself to be hospitalized. So instead I take high doses of the prednisone and wait for another possible drug. I will not allow myself to take so many different experimental drugs. I would urge Centokor to continue to hunt for a drug for remission of Crohn's as they seem to be the drug company exploring this disease the most. In the meantime I will continue to take my pain medication.....thank God for Dr. Konen and his understanding of pain. I hope everyone gets the pain medication they need and takes it. There are reports on television now about the danger of some new pain meds, but reporters and addicts don't understand the pain a person can feel..and then addiction becomes a moot point. Thanks again to all those that find these pages useful and drop me an e-mail. We are all in this fight together so I urge everyone to write their doctors, insurance, and drug representatives and ask them to continue their hunt.