Looks Like a UC Duck, Sounds Like a UC Duck, But . . . Not a Duck?
I was diagnosed with ulcerative colitis in my late fifties. In the middle of January, after what felt like a normal bowel movement, I noticed a lot of mucus amongst the stool. (Yes, when you reach a certain age, you check out what drops out of your body in the toilet.) I didn’t think anything of it, just thought it was temporary. But after six weeks there was blood, so I made an appointment with my family doctor who tested me for food allergies. All were negative. He then referred me to another doctor. I have had three colonoscopies, and this second doctor (I’ll call him Dr. Reynolds) had performed two of them. Because of his office design and his doing colonoscopies, I assumed he was a gastroenterologist. He turned out to be a general surgeon. Not a bad thing, but not what I thought.
Despite telling Dr. Reynolds that the toilet bowl was full of blood with most bowel movements, he said I had hemorrhoids. He even did a quick looksee for confirmation. He told me to take more fiber and sent me home.
I tried an elimination diet to pin point my trigger
The next four months were a slow drain. Lots of blood, sometimes urgency when going, sometimes not, sometimes achy pain afterwards, sometimes not. I eliminated foods from my diet one at a time to see if what I was eating was affecting my stomach problems. I removed dairy, bread, peanut products, chocolate, beef, and some things I can’t remember now. I ate raw vegetables for over a week and then ate a salad every day. But all for naught. Nothing, and I mean nothing changed. The symptoms never abated nor did they get drastically worse. I just continued my sluggish downward spiral.
After two months, the frequency of bathroom visits increased. By the end of the fourth month, it had increased more. Time for another trip to the doctor. Dr. Reynolds and I discussed doing a colonoscopy, but my last one was clean and only three years previous. Neither Dr. Reynolds nor I were eager for another one (especially me) so Dr. Reynolds prescribed dicyclomine, an anti-muscle spasm drug to slow the colon down. It worked well. My bathroom trips dropped significantly. But while my intestinal symptoms eased, they never went away. While visiting family, we took a drive in the mountains in an old truck on a bumpy road. That was a hard, almost disastrous trip for my colon.
Two months after taking dicyclomine, I started making multiple trips to the bathroom at night. Despite that, I felt really good and stopped taking the dicyclomine, since I was only supposed to take it until I felt better. For three weeks, I felt great, although the blood and diarrhea had never stopped since this whole thing started. Then, it hit in earnest. I was going to the bathroom ten times or more a day.
I decided it was time for a colonoscopy
I saw Dr. Reynolds a few days after Thanksgiving. By then I was constantly in pain. I could only walk bent over. I was nauseous and sometimes threw up while sitting on the toilet. I was going to the bathroom about every ninety minutes and it was blood and straight liquid diarrhea. I was barely eating because food and water tasted awful, with a horrible metallic, acidy taste. Even brushing my teeth did not get rid of the taste. Dr. Reynolds and I decided it was time for a colonoscopy, although he did state again that he was pretty sure I had hemorrhoids, and I stated again, for the third time, that blood filled the toilet bowl. The colonoscopy was set for the first Monday in December.
The week before the colonoscopy was my worst. All of my symptoms in overdrive and feeling very weak. It was an effort to talk. Once on the couch or in bed, I was afraid to move because I knew as soon as I did, I would often have to run to the bathroom as fast as my pained body would let me. I clearly remember after one very bad and long trip to the bathroom. After sitting on the toilet forever, in pain, I stumbled from the toilet to the sink to wash my hands and the thought crossed my mind, “Am I dying?” Because that is how I felt. But I was in such pain and misery, I didn’t care. I just wanted all of it over.
The colonoscopy and after
Colonoscopy preps are awful. Usually not physically painful, just an unpleasant nuisance. But this time, it was extremely painful emptying my bowels. And by this time, I had stopped eating. My only nutrition was meal replacement shakes.
By the time I went to the hospital for the procedure, I could barely walk. When they weighed me, I realized I’d lost nine pounds in five days, for a total loss of twenty pounds over a month. I’m a petite person, so I did not have twenty pounds to lose. Now on top of my other symptoms, I was undernourished.
The nurses were very concerned. I could barely get into the hospital bed by myself. Once I was hooked up to all of the machines, I heard them comment on my rapid heart rate, well over 90 beats per minute. After the colonoscopy, the nurses called my husband. He came and sat next to me to wait for the anesthesia to wear off. I told him they called him too soon, I wasn’t ready to leave. He told me they didn’t call him to pick me up, they called him to sit with me as I recovered. They also said I was dehydrated, so they set a bag up to rehydrate me through my I.V. and said I couldn’t leave until the bag was empty. That is how worried the nurses were about my condition.
My colon looked like chopped liver
Dr. Reynolds showed me the colonoscopy pictures. My colon looked like chopped liver. I think that is when he finally realized I had more than hemorrhoids. He sent me home with a prescription of mesalamine, two per day. They improved me a little, but not a lot. I was still in a lot of pain, not eating, having multiple trips to the bathroom, and miserable.
A few days before Christmas Dr. Reynolds’ nurse called and said they were referring me to Dr. Weber, a gastroenterologist. I called his office and he was out of town until the last week of January, with his next opening in the middle of February, seven weeks away! However, there was a cancellation at the beginning of January with his assistant. I grabbed that appointment to get my foot in the door. I was able to make a follow-up with Dr. Weber at the end of January.
The appointment with the assistant did not go well. I showed her the pictures of my bloody, chewed up colon. We went over my symptoms. I told her I’d lost twenty pounds and had cut foods out of my diet trying to find a trigger. All she did was tell me to stop eating dairy and sugar. (She did tell me about a product called Lactaid milk which tastes pretty good.) I told her I had not ate any dessert type food in the last five weeks, and that I was barely eating regular food, so if sugar was causing the inflammation, surely I would have noticed a difference. She ordered more tests (Dr. Reynolds had already ran a battery of tests, twice) that she said were more comprehensive than Dr. Reynolds’ tests, told me to purge the dairy and sugar and that was it. But I needed to gain weight. Do you know how hard it is to gain weight without eating sugar??? I bought the Lactaid milk and tried to cut out sugar, but after two weeks, I realized all that was happening was I was losing more weight. I thought, “the heck with it.” I stayed with the Lactaid milk but abandoned trying to cut out sugar. I also started to wear adult diapers at this time, which was a great help and relief. About the third week of January I was finally able to eat more than a few bites of dinner.
All my test results were negative
The appointment with Dr. Weber was much more constructive. By then, my test results were back. They were negative. (All of my intestinal test results were negative, including a CT scan and the biopsies extracted during the colonoscopy. I believe it is one reason Dr. Reynolds was so stymied about my condition and couldn't wrap his head around it. My protein and iron numbers were way low, however. I had anemia. Your iron numbers are supposed to be between 50-75. Mine were at 18.) But Dr. Weber took one look at me and said, “We need to get you better.” He upped the mesalamine prescription from two to four a day and added a prescription for prednisone, four a day for two weeks, to be tapered down to half a pill a day, then hopefully completely off. My family doctor started me on iron pills.
Within forty-eight hours I was feeling SO much better! (This was the prednisone kicking in.) Just as my symptoms had slowly gone downward, now they began to slowly improve. Two and a half weeks later I texted my kids to tell them that for the first time in a l-o-n-g time I felt normal, relatively speaking. A few days later I was able to vacuum my house! A few days after that I was able to go down the stairs into the basement and up again! I hadn’t been in the basement for three months. I started driving again. Sometimes it’s the little things that make us smile! My stool started firming up. I stopped wearing diapers.
My ulcerative colitis diagnosis
In my mid-February visit, because of my awful looking colonoscopy pictures and positive reaction to the medications, Dr. Weber said he was officially diagnosing me with ulcerative colitis, despite the negative lab-test results. He said he had a few patients whose tests results were always negative. I think he was going by “if it looks like a duck, sounds like a duck . . . “
The prednisone made me ravenous. Normally this is a bad side effect, but since I needed to gain weight, it was a positive for me. Food tasted absolutely, wonderfully delicious. I was eating three times my normal amount of food. No . . . I wasn’t eating, I was consuming three times my normal amount of food. Not long after I started taking the prednisone, one of my wonderful neighbors brought me a large, creamy chocolate shake and two juicy, sloppy hamburgers from a local fast food place. Just the smell of the protein about made me catatonic. I took the lettuce off the burgers and inhaled them and the shake. Those were the most scrumptious items of food I have ever eaten. I finally started to gain weight, about a pound a week.
A SPEED BUMP. A BIG ONE.
The rotten downside of medication for UC
In my joy of finally feeling better, there was a rotten downside. Mesalamine is mega expensive. Even using GoodRx, a discount prescription company, the cost for 120 pills (four a day) was almost $400 a month. Our insurance only pays for prescriptions after the deductible is paid. Going through GoodRx does not count toward our deductible and going through our insurance was much more expensive than GoodRx. During my mid-February appointment with Dr. Weber, we talked about this. He prescribed a much cheaper medicine, sulfasalazine, although I would have to take three pills, three times, for a total of nine pills a day. Amazingly, a month’s supply was around $25.
So I started taking the sulfasalazine. Immediately I was besot upon with multiple extreme side effects which included an itchy rash, headaches (I had the worst headache I have ever had the first night after taking the sulfasalazine, and I used to get migraines), intense heartburn resulting in yet another prescription, muscle shakiness that caused me to feel like I was going to fall down at any minute, loss of appetite, and dry-heaves. I couldn’t walk down the basement stairs anymore. (Sadness!) I started losing weight again. I cut back to six pills a day which cut back on the side-effects. But they were still there.
If the medicine were temporary, as in I needed to take it for only a few months, I would have just soldiered through even if it meant staying in bed the entire time. But this is medicine I’m probably going to have take for the rest of my life. There was no way I could deal with those incapacitating side effects for the rest of my life and have quality of life. So I talked to Dr. Weber again about alternatives.
He prescribed balsalazide, another nine pill a day medicine that was much cheaper than mesalamine. Immediately the side effects went away and I felt so much better. I was excited that we seemed to have found an inexpensive medicine that worked. But my excitement was premature.
My intestinal symptoms returned
I started down the slow slide into the colitis world again . . . pain (often intense), diarrhea, blood, multiple urgent trips to the bathroom, severe fatigue, weakness, throwing up, and food not tasting good. I had to wear diapers again. I hoped it was just taking time for the balsalzide to kick in (some of the medications for colitis can take up to eight weeks or longer to work), but after taking a month’s worth, I realized the balsalzide was not working. My body reacted like it was not getting any medicine at all.
I called Dr. Weber’s office again, but they never called back. After talking with my husband, we decided I'd go back on the mesalamine and eventually we’d reach our deductible. I started the mesalamine in mid-May AND the prednisone again and s-l-o-w-l-y started recovering. By the end of June I was able to stop the prednisone. Again, I was excited to have found a medicine that seemed to help, even if it was expensive!
However . . . it was not to be. Six weeks later I could no longer deny my downward spiral. Once blood appeared in the toilet, I went back on prednisone, 20 mg a day, continuing with the four mesalamine a day. It helped immediately.
My next G.I. appointment is coming up. I’m afraid my doctor is going to recommend Humira to get me off of the prednisone. I’ll probably be having my next colonoscopy after that.
NOT A DUCK?
One strange thing. At my last appointment, Dr. Weber said that, although he had diagnosed me with ulcerative colitis, he is STILL not sure that I have ulcerative colitis. He agreed that my previous colonoscopy pictures showed a raw and bleeding colon but said my colon did NOT look the same as his other UC patients. And then there’s my negative biopsy, stool, CT, and blood tests.
So I’ve been diagnosed . . . sort of. I may be a duck! Or maybe a weird, mutated cross between a duck and some unknown beastly fowl. It just means, forward we go, grateful for the medicines that are working, and hopeful for finding a maintenance medicine that works better.
Do you have a diagnosis story to share?