Write me down as happy with my colectomy and j-pouch.
I've been taking loperamide (immodium) twice a day since my loop-ileostomy take-down in 2007. About a month ago I missed several doses in the same week and didn't notice much difference in my stool consistency. I decided to stop taking it all together. It's been a success and I'm glad to not be taking any medications at present. All I'm taking now is a multi-vitamin and mineral supplement. Medications are nice to have when they are needed, but it's a blessing to not need them as much.
Write me down as happy with my colectomy and j-pouch.
The day arrived for my visit with the colorectal surgeon, Dr. Sklow, at the University of Utah. The University of Utah is a teaching hospital. As such, you don't usually see just one doctor. Usually several doctors at different levels of preparation visit with you. I was first seen by a resident doctor, and then Dr. Sklow came in and visited with my wife and me. My four years as an Air Force Medic had given me insight. I knew what to look for in a doctor and I was very impressed by Dr. Sklow. He asked the right types of questions. He listened to me intently, waiting for my full response. He thoroughly discussed the plan for surgery. In addition he gave me a booklet about the j-pouch.
He did have to do an exam I had never had done before. The purpose of the exam was to help insure that I had ulcerative colitis and not Crohn's. The exam involved putting a scope/speculum in the anus. The doctor explained that ulcerative colitis would not be on the actual anus tissue, but Crohn's would be. He further explained that the doctor from Idaho Falls, who diagnosed me with ulcerative colitis, had sent him a patient in the past with a diagnosis of ulcerative colitis, which was eventually proven to have Crohn's disease. If this were crohn's disease, I would not be a candidate for surgery, as the disease would just return someplace else. I understood the reason for the exam, but it was very uncomfortable. This was at a point in my life when I had poor bowel control, and putting something in that area made me nervous, and was very uncomfortable. Luckily the exam only lasted a few seconds.
I was confirmed to have ulcerative colitis. We further discussed the plan for surgery. I was to have my entire large intestines removed. He would then take the end of my small intestines, the distal ileum, and make a j-pouch. This would be stapled to my anus. Additionally he would bring part of the small intestines through the skin and create a temporary loop ileostomy. An ileostomy is like a colostomy, except that it is from the ileum instead of the colon. The plan was to have the ileostomy for 2.5 to 3 months while the anastomosis of the j-pouch to the anus had time to heal. The surgery was being done in phases to reduce the risk of infection. If the connection didn't heal right and began to leak into my gut, I could get really infected. Sepsis and death are real possibilities when stool leaks inside of you. The entire surgery was expected to last 6 to 8 hours.
I was excited. When could he do the surgery? I would gladly have gone in the next day. They weren't able to get me scheduled until the end of February. That was over a month away and that seemed like a really long time. I spent the next month and a half, mostly just lying on the couch at home and running to the bathroom. Such was my life now.
Two days before the surgery my wife took me out to one last good dinner. It would be awhile before I was able to eat real food. We went to my favorite Mexican restaurant in Idaho Falls, Idaho. I ate Mexican food and drank orchata until I was as stuffed as after Thanksgiving dinner. The day before the surgery we went from Idaho to Utah and stayed with my sister in a suburb of Salt Lake City. There I began one final bowel prep.
I drank the prep and then had to drink a gallon or more of a beverage of my choice. I chose a pineapple flavored soda. This was one of the few foods/drinks that still tasted good to me that was clear enough to drink for the prep. Over 5 years have passed and I still do not enjoy pineapple soda as much as I used to. I would recommend drinking something you can tolerate, but that isn't one of your favorites for all bowel preps. Even though I began the prep in mid-afternoon I was up most of the night going to the bathroom. By morning I felt famished. I was used to feeling weak, and a night of bowel prep only made things worse. Now it was off to the hospital.
Many medications had not worked for me (or had given me seizures). I had tried Asacol, Colazal, Prednisone, and Mercaptopurine. I had tapered off of the medicines, fed up with the poor control over my bowels and the side effects of the medicine. I do realize that there are people who have good control of their Ulcerative Colitis or Crohn's Disease with medication; I just wasn't one of those people. I was diagnosed with Ulcerative Colitis in the fall of 2005. By about Halloween of 2006, I knew nothing was working and I needed surgery. Not wanting to disrupt anybody's holiday celebrations, I waited until after the first of the year.
When I got up in the morning of January 2nd, 2007 I asked my wife to make me an appointment with a surgeon, the same day if possible. She asked if something was wrong. Of course something was wrong, and I was ready to fix it for good. She asked which surgeon she should make the appointment with. My reply was that I didn't care, as long as it was a general surgeon that could get me in that day. That afternoon I saw Dr. Boyd Hammond in Idaho Falls.
I took a copy of my medical records. My vital signs were taken. I remember my blood pressure being in the low 80's over the high 60's, something like 82/68. No wonder I could barely walk up a flight of stairs. My fatigue was worsening all the time. I explained the side effects I had from the medications. We reviewed the many tests I had, including several colonoscopies, endoscopy, capsule endoscopy, testing for celiac disease, blood work, and biopsies. We reviewed my current symptoms, including several episodes of incontinence. The doctor did the most thorough exam I had had to date. Luckily my wife had stumbled on a very good, experienced surgeon. The surgeon made his recommendation.
He was clear, "you need surgery." Those words, which may have scared some people, were a comfort to me. I asked him when he could do the surgery. He informed me that he wouldn't do my surgery. He went even further. He was honest enough to tell me, that although there were a few doctors in town that had done total colectomies, none of them were really experienced enough. He told me he wouldn't let any of them perform this surgery on him. He told me about a doctor who specialized in colorectal surgery at the University of Utah in Salt Lake City, Utah. He told me it was a very good surgeon, by the name of Dr. Bradford Sklow. He would personally call Dr. Sklow's office and get me an appointment.
I went home and waited for the call. An appointment was made in just a couple weeks. It was the earliest I could get in to Dr. Sklow. I waited with anticipation, not nervousness. I saw this as a great opportunity for me. If removing my entire large intestine would improve my bowel habits and way of life, I was all for it. At the same time, I often got after doctors for touting that as a cure for Ulcerative Colitis. I told them I thought that was like curing a broken or infected toe, by amputating the foot. I could hardly wait to get my intestines out. Living with an ostomy bag didn't sound like that bad of an option to me.
I wasn't off of the Asacol very long before my symptoms returned worse than before. They then put me on Colazal. Colazal also has mesalamine as its active ingredient. In other words, different brand, same medication. After about a week on the Colazal, my head began feeling tingly again, as it had on Asacol. I stopped taking it and my neurologist agreed that I should ever taken Asacol or Colazal again. The physician's assistant at the gastroenterologist's office wasn't as convinced. He seemed angry at me, talked down to me. He told me that if they couldn't get my ulcerative colitis under control I may need surgery and could have a colostomy for the rest of my life.
I asked him, "if you had to choose between thinking straight or pooping straight, what would you choose?" He never really did answer that question. We disagreed on the fact that flagyl had given me diarrhea, my position was that it was a poor drug to choose since my symptom (bloody stools) was not likely caused by giardia. I pointed out to him that flagyl can actually cause pseudomembranous colitis. He said it couldn't. I told him to read the package insert from the drug manufacture and learn more about the medications he prescribes. It was the last time that office ever told me that I couldn't have a visit with the actual MD because he was too busy.
Thereafter my visits were with a doctor. I think the physician's assistant didn't want to see me anymore. Each visit, the doctor would sit with his legs crossed, rarely making eye contact. He would pay the most attention to my record on his tablet computer. Eventually he would say in a therapeutic voice, "You have what we call Ulcerative Colitis." What a joke! Did he think he was so stupid I couldn't remember that diagnosis in-between my visits which occurred at least monthly? It seemed as though he was treating me like a small child. He would review my blood work. He would ask about my daily activities, and then sometimes declare that most people with blood work that looked like mine were unable to work, on disability, and in the hospital. Maybe so, but how could he help me. I was an active person, and very stubborn. Other medications were tried.
I was given mercaptopurine, a 6-mp drug. The doctor told me it was so safe that they prescribed it to pregnant women. I later discovered that it was commonly used for chemotherapy for cancer patients. I was also put on prednisone. The plan was to decrease the dose after the mercaptopurine started to work. This drug never seemed to work for me. Each time the dose of prednisone was decreased my symptoms returned worse than before. I began to experience joint pain, primarily in my hips and shoulders. Sometimes when I went to the bathroom, I wasn't sure if I passed anything, but blood. I definitely was not getting any better. I sought a second opinion.
The next doctor I went to was very worried about the joint pain. Apparently some people are genetically predisposed to a bad joint problem, and should not be given mercaptopurine. He ordered blood tests and x-rays to check my hips. Everything checked out o.k., but it still seemed reasonable to stop taking the mercaptopurine since it had worked after several months. I was now on high doses of prednisone. Initially it did help my ulcerative colitis, but its effect seemed to be ever decreasing. Weight gain was the only good side effect I experienced from prednisone.
I experienced psychotic side-effects. At the time, I was unsure if this was due to seizures, seizure medication, or what. I didn't talk about them until they had been gone for about a year. I heard voices. At first the voices seemed like a dull mumble. I could be sitting alone in a room alone at home, and think I heard a person or two speaking softly in the other room. Of course, if I went into the other room nobody was there. I would check outside, but nobody was there either. The voices usually came when there weren't people talking or other sounds. They got louder as time went on. Sometimes it seemed they were talking in the back seat of my car when I was driving alone. They became more audible with time. They spoke clearly, and never said nice things. Mostly the voices just had insults or told me to go do bad things. They would taunt me. I pretended not to hear.
There was no way I was going to start arguing with those voices. They got more frequent and even started talking to me at work, whenever nobody else was talking. When I wasn't listening to somebody or some music, the voices were there. It was so bad; I had to listen to music as I went to sleep at night to keep the voices from disturbing me as I tried to fall asleep. I became somewhat paranoid of many coworkers, neighbors, and close friends.
In the past I had to be close to a bathroom, but now sometimes close wasn't close enough.
There isn't much as humiliating as suddenly feeling such a strong urge to defecate that your only choice is to crouch down on the sidewalk and try with all your might not to use the bathroom, while your body cramps and you lose all control. I didn't recognize that the psychotic side-effects were due to the prednisone until I went off of it. I did go off of it. I was at my wits' end. I spoke with yet another doctor about tapering off the prednisone. A taper schedule was written and approved by the doctor. I now knew I needed surgery, but it was the holiday season and I didn't want to disrupt anybody's plans. I waited until the holidays were over.
The colonoscopy was scheduled to take place in about a week and a half. My test results for parasites came back. I had giardia. This didn't really explain much. Giardia is more of a small intestinal bug and I was obviously bleeding from the large intestines as the blood was bright red. Upon researching giardia I found that in the U.S. approximately 5% of the population may be positive for giardia at any given time. Most people just don't have symptoms and it will usually run its course after about 3 months. In fact, giardia wasn't always considered a bad bug, they used to consider it normal flora (normal bacteria and such for your gut). In any event the physician's assistant called in a prescription for me to pick up. Oh yeah - I was also reported to the state health department, giardia is a reportable disease apparently.
The prescription was for metronidazole, brand name Flagyl. According to the FDA this drug is NOT specifically approved for treatment of giardia, but is prescribed for that. How is it that the FDA knows this drug is commonly prescribed for the treatment of giardia, but they haven't approved it for that use? I have no idea. Remember that I was having more frequent stools with blood in them. I was not having diarrhea when this started. I took the Flagyl and diarrhea started within 24 hours. It continued to worsen and I also noticed that my throat seemed to be getting irritated and swollen as well. Could this be my first allergic reaction to a medication? After 3 days I decided I couldn't endure the full 10 days of treatment and called the doctor's office.
An actual doctor was on call and he seemed confused that I had been prescribed Flagyl without having diarrhea and more confused that the medication had actually given me such bad diarrhea. I explained to him that I was so sick now I would end up in the hospital with severe dehydration in a couple more days. He instructed me to stop taking the Flagyl, which I gladly did. Testing several months later would show I no longer had giardia anyway. Another interesting development occurred during this few day period.
I remembered that one of my aunts had colorectal cancer when she was very young. I called and talked to her. I know that many diseases can have similar symptoms, but I was scared after speaking with her. I was 30, and she had cancer in her late 20's. When I described my various symptoms to her, she got very upset and said that was how she presented with cancer. She told me she wished I did have cancer. Now there’s something nobody had ever wished on me before. Her reasoning was that after 1 operation she was cured and some intestinal diseases aren't so easily cured. I called my doctor's office and told them about my aunt. They seemed a little upset with me for not telling them at the office visit that I had a family history of colon cancer. I apologized and simply said, "I forgot". It's not like we all sit around keeping carefully logs of all the ailments that have ever affected any member of our family tree. Maybe we should. Maybe such logs could come in handy sometimes. My appointment for colonoscopy was moved up.
Waiting seemed to be the hardest part. I really wanted to know what was going on with me. I had seen colonoscopies as a medic, so I kind of knew what to expect. But, it is different being the patient. There was something I had not anticipated that goes along with the colonoscopy - the bowel prep.
They called my name and I left the waiting room. The nurse or aid took a set of vital signs and asked me some questions: Do you smoke? Do you drink? Do you have any pain? Do you have any diarrhea? Do you have any family history of colon cancer? These were the same types of questions they had asked me over the phone when I called to make an appointment. They seemed not to believe me. That or they thought something really bad was wrong with me. I could tell by the looks on their faces and the way they got quiet after I answered the questions. They looked puzzled and concerned.
I visited with a physician's assistant who again asked the same questions. He also did an exam which included my laying on the exam table while he poked around on my abdomen. The only pain I had was a slight discomfort in the lower part of my belly, the area of my bladder. After he asked the questions and did the exam the time came for explaining a diagnosis. The first thing he said was something like, 'Well, it can't be cancer because you're too young for that.' Did he seriously just say that? To me that meant that the first thing he thought of was cancer, and that he was ruling it out solely on the basis of my age. Deep down I knew he thought it sounded like cancer and this bothered me. He then explained the 2 things he thought this likely was: Diverticulitis or Crohn's Disease. I had heard of these, but didn't really know what they were.
He explained that Diverticulitis is caused by a bunch of little pockets in the Large Intestines, which become inflamed at times and can bleed. I later found out that that disease is much more common in the elderly. Crohn's Disease is basically inflammation of some portion of the digestive tract (from the mouth to the anus) which can start to bleed. Surgery is usually avoided unless perforation is suspected or believed to be imminent, because you need your digestive tract, and if they cut out the affected portion, Crohn's will return in another area. After the explanations, lab tests were ordered, just in case it was a parasite. I was also scheduled for a colonoscopy. That was a test that I don't think my dad had even had, I was feeling really old.
Some descriptions in this post may disgust some people. Those who study or have experienced these symptoms will relate to the descriptions. My intent is not to offend, but to educate.
In the fall of 2005 I began to notice blood in my stool. I wasn't really having any cramping. In fact I didn't really even have diarrhea. I was having 2-3 stools per day, instead of the 1 I would normally have when I didn't have diarrhea. The stools were somewhat yellow (not normal for me) with obvious amounts of blood mixed in. I didn't strain or experience any pain, so I figured whatever it was, it wasn't a hemorrhoid. I did notice that I had the urge to urinate more frequently, and felt like I had to go even immediately after voiding. Urination didn't cause any pain, but other than the blood this was my only symptom. I waited to see if this would go away. After about 3 weeks it was getting worse. Still no pain, but the amount of blood was increasing. I figured I had better see a specialist.
I knew a co-worker had a sister that worked at a hospital, so I asked her what specialist I should go see. Following her recommendation I made an appointment to see a gastroenterologist. When I called to make the appointment they asked about my symptoms. They seemed incredulous that I had no pain. They asked if I had pain when I pushed on my abdomen. I pushed around a bit and noticed that I did in fact have a small amount of discomfort when I pushed over my bladder. They said they would mail out some paperwork for me to fill out and bring to my appointment.
A couple days later my wife asked me what a gastroenterologist was. I asked her why she wanted to know. She said we got something in the mail, and she thought it may be for my grandfather. I have the same first name as my father and grandfather, so such mistakes have been known to happen. She was appalled when I asked what she had done with the mail, and told her it was for me. She was upset that I hadn't told her about the problem. She was very worried about it. I told my wife that that was exactly why I hadn't told her. She had 3-4 weeks less to worry because I hadn't told her. We still disagree on whether or not this was the correct approach. My wife feels I should have told her. I feel that it would have done no good to tell her sooner.
I filled out the paper work and waited for my doctor's appointment. When the day came, I went alone to my appointment. In the waiting room were magazines like in other doctor's offices I had been to. These magazines all seemed to be for old people though. I looked around the room and realized that, at age 30, I was by far the youngest person in the waiting room.
I was an Air Force Medic, a 4N051 (that was my Air Force specialty code) to be exact. Being a medic, I worked in the hospital located at the U.S. Air Force Academy near Colorado Springs, Colorado. It was a wonderful place to live. My family enjoyed the outdoors, regularly hiking various local trails and visiting lakes and reservoirs. Most people aren't in the hospital for no reason. Generally they have one or more health problems they are dealing with. As a medic I cared for these people. Essentially my job was similar to that of a CNA in the civilian world, with added duties such as drawing blood, starting IVs, and maintaining EMT registration.
Every job has risks, and the health field is no different. They really don't know was causes Ulcerative Colitis. Yes, they can describe a bundle of signs and symptoms which are used to diagnose the condition, but they really don't know what triggers it. I personally think it is due to a bacteria imbalance, which leads to the other problems. Whether I somehow picked it up at work or someplace else, my first symptoms started while serving in the Air Force.
In August of 1998 I began having diarrhea. I'm not talking about 1 or 2 episodes. More like waking up a dozen times at night to run to the bathroom. I went to sick call seeking treatment for this horrible diarrhea, which was the worst I had ever had in my life. When the doctor entered the exam room, he was brief. He asked what was wrong and I expressed my concern over the amount of diarrhea I was having, and let him know I was scheduled to work that night. He just looked at me and said something like 'you look fine, I'm on call tonight; call me if it gets worse.' That's it! No testing, no samples, not even some blood drawn. If you have ever served in the military you know that an E-2 or E-3 is not about to page an O-4 in the middle of the night, when he was already told 'you look fine.' I really felt put out by this Major, and thereafter referred to him (to my colleagues) as "Dr. Cuckoo".
This reminded me about the 2 times I went to the nurse's office when I was in school. In 3rd grade I had a stomach ache and went to the nurse's office several times. She kept telling me that I wasn't sick. After I finally vomited on a kid standing in the way of the bathroom door, I was sent back to the nurse's office. She announced "you're sick." Later at another school I began feeling feverish and ill during 7th grade. I went to the nurse's office a couple times, but she refused to let me in to see her, stating she was too busy. Finally one of my teachers pulled the nurse out of some 'important meeting' and demanded that she see me. I was sent home with a temperature of 102.5 and later diagnosed with strep throat. Some people look very sick when they don't feel well, with other's you can't tell as easily. Apparently I fit into the latter group. Maybe I should have put on my saddest face and cried each time I went to the nurse or doctor's office. In any event, I didn't. I reported for work as usual that night.
At work I spent a lot of time in the bathroom. My coworkers knew that I was not playing around. I always arrived to work early and did my job well. One of my patients that night was a small child, whose mother stayed with her. This child's father happened to also be a medic at the same hospital. He came up from the ER, where he worked, to check on his child and say hi to his wife. He wanted to see the medic taking care of his kid. He was really upset when my coworkers told him that I was in the bathroom sick, that I had been to sick call, but was there taking care of his kid. Hospital workers know you shouldn't take care of patients when you have something that might be contagious. He invited me to come see the doctor he worked for in the ER.
In the ER the doctor immediately got upset with me, asking why I had not gone to sick call as was the hospital policy. The medic stepped in, explaining that I had in fact gone to sick call and been told to go to work. The doctor sent me home with some pills for nausea. I hadn't actually thrown up yet, but was feeling nauseous. Again, no testing of any kind was done. I really felt put out, and later found out that in my chart the doctors put there was no blood in the stool. Why would they put that when they didn't even check it? I was frustrated and feeling really put out by 2 doctors at the very hospital I worked so hard at.
The diarrhea didn't stop. It lasted about a month that time. Nurses at work gave me advice to stay away from dairy products and try the brat diet (bananas, rice, applesauce, toast). I did so, and after about a month the diarrhea finally went away. Or did it? I continued to have diarrhea 2-3 days per month. Sometimes it was worse than others. It continued following my honorable discharge from the Air Force in May of 2001.
By then I had already learned to stay away from grape juice and other highly sweetened drinks. I would soon have to stop drinking orange juice as well, noticing that it aggravated the situation. Other foods were added to the do not eat list, such as lettuce and other raw foods high in fiber. I kept a roll of toilette paper in a bag under the seat in my car, and another in the minivan. Unfortunately these sometimes came in handy on drives in uncivilized parts of Idaho. When I went hiking, I kept a roll in my backpack. I didn't take this problem seriously. After all I had seen 2 doctors who obviously didn't think my problem was very important. The doctors and I would both start to take the problem more seriously a few years later.
Clip Holverson Jr. was diagnosed with Ulcerative Colitis at the age of 30. Follow this blog to read about the treatments, including surgery, he eventually had to treat it.