Blindsided By Ulcerative Colitis
Last updated: December 2022
My name is Michelle. I was a very active athlete and felt healthy. It was the end of May in 2015 heading into Memorial Day weekend (Friday). I had gone to my mother's PCP appointment following up from a MRI she had for back pain. She had broken a vertebrae previously two years prior and her back was never the same. We got to her PCP doctor office in the afternoon and were given devastating news of her results from the MRI. She was told she had lung cancer and it was a big mass. The PCP sent her on her way directly to see an oncologist and start aggressive chemotherapy. I drove my mother home from the appointment with tears in my eyes, but we did not speak to much. I told her that we would take care of it. I headed off to the gym for my regular workout and was overcome with sadness. I left and friends were concerned and of course said everything will be alright. But it wasn't.
Now come June, 2015 and my caretaking is the main priority. Driving to scans, x rays, blood tests, and chemo. My mother made it for three days of full chemo and felt good, but weak. She was due back in a week for another round for three days, but grew ill quickly. She now was facing the wrath of chemo, losing weight, getting nausea, and needing my assistance for going the bathroom and to lay down. Thank goodness we lived in the same house just on two separate floors. I with my husband and daughter on the second floor and my mother and father on the first floor.
My mother did not make it to the second round of chemo as she needed to be brought to the hospital as she was fading away. I could take her blood pressure and temperature, but had no idea what was happening inside. She did not want to go, but agreed. We arrived on a Monday, July 6, 2015. She was alert and knew what was happening. She was given a CT scan. Myself and my father were told that the cancer is spreading and there will be no more treatment. Within four short days of staying in the hospital and two of them in Hospice (just another room) and sedated, she passed away. I had stayed at the hospital from morning to night and was begged by nurses to go home and get some rest. The morning Of July 9, 2015, I went up a little later morning than usual, and it was too late. I was devastated. My best friend, gone.
Noticing new symptoms for the first time
I never had stomach pains that I can remember, just headaches, and tired. I wrote it all off as stress and trying to just get by without my mother. One day in August after a few weeks of my mother's passing, I noticed a very small amount of blood after having a bowel movement. Again a little on the toilet paper. I now was frightened, and called my PCP to make an appointment. I saw my PCP on August 9, 2015. He did an exam and an a Occult test for blood in the stool. It was positive. He did tell me that he believes I have ulcerative colitis, but a gastroenterologist would have to properly diagnose it. He referred me to his colleague who was a gastroenterologist. I could not get an appointment for a month. Meanwhile my anxiety is through the roof.
Diagnosed with left sided ulcerative colitis
On September 9, 2015, I did have my colonoscopy and it was confirmed that I had left sided ulcerative colitis. I was prescribed Mesalamine and Budesonide. This cocktail of like 15 pills a day was overwhelming especially for someone who rarely took a advil or tylenol unless needed. I was told to follow up in a couple of weeks. I had no clue was ulcerative colitis was and that is was for life! The gastroenterologist basically said it was a nuisance disease?? What?? I had no experience in this ulcerative colitis field, but let me tell you, I got educated quick and read and looked up everything there was about it. I felt I was not being treated properly from this doctor and just being gaslighted about it and to just keep taking Budesonide and the Mesalamine. I would call the office as my symptoms were not improving and I was getting worse. I would have urgency, rectal pain, tenesmus, and feeling defeated. I called and basically had to say I am not feeling good and was told to come in and the doctor would do a Sigmoidoscopy in the office. A what? I never heard of this. I was not sedated and it hurt. I was told my rectum was fine. To continue the medications and the only other advice from the doctor was another colonoscopy. I had enough. I searched out a new gastroenterologist with more expertise and different advice. This was after a year of torture.
I was terrified
I called my Healthcare System and explained my concern and that I cannot wait another month or so to see another gastroenterologist. They were able to squeeze me in on short notice within a week to a new doctor. I followed up with this new gastroenterologist and he was very nice and knew his stuff, but I was terrified as he was mentioning words and tests that I knew nothing about and never had with the first doctor. Things like CRP, SED rate, Ferritin, Calprotectin test, etc. And then another colonoscopy to see where I am at. I was also prescribed for the first time, Prednisone. I was scared. The Prednisone helped, but was not perfect and I was also prescribed Lialda. Another 4 pills a day. All other medications from prior doctor were stopped. I had my second colonoscopy, and what I suspected, I was much worse. I now had full pancolitis which is no part of the large intestine or rectum are spared of ulcers throughout. I was told to take a larger dose of Prednisone, 40mg for a while, then 30mg, and taper eventually. Meanwhile, the new gastroenterologist was explaining a new treatment plan (big guns as he said) with a biologic. Again, another scary word and no clue what it is. He said I had the option of Remicade or Humira. I researched then and prefered the infusion of Remicade over self injection of Humira. The thought of shooting myself with a needle every other week was traumatizing. I was then told I have to try Humira first because of insurance reasons. Another red tape in treatment!
Starting a biologic for UC
So, I was told to come into the office and see the nurse who would train me on how to inject myself with the Humira. I did the training, and then a woman came from the company and also showed me and had me do my first injection in front of her. This is now November 2016. I could stop taking the Lialda as I was just passing them and not helping. I remained on Prednisone while on Humira. This medication is delivered on dry ice and must remain refrigerated all the time until ready to use. I continued on my Humira injections throughout the holidays and into the New Year 2017, but with little or no improvement. I also had requested if I could be switched to a female in the office as the doctor who I originally wanted. I was scared and thought maybe a better fit with a female. I am also of age that Per-menopause is in gear. I am turning 50 in September 2017 and want a woman perspective. I know it sounds cliche but that's how I felt. The new woman gastroenterologist had done both a sigmoidoscopy and a colonoscopy. I was told to now inject the Humira once every week versus once every two weeks. Well, I just got sicker and had chills, sweats, stomach pain, could not eat, bathroom trips up to twenty times a day. The last colonoscopy this woman doctor did, she called a colleague from the room and then gave me instructions to see this colleague as she is more informed about ulcerative colitis. I am now on the fourth doctor for my UC.
Treatment after treatment
Before I could even see the new woman gastroenterologist that the prior one sent me to, I was told to stop the Humira and continue the Prednisone now back up to 40mg. I am at this point losing weight, feeling very fatigued, and just sick. Up to thirty times a day to the bathroom for liquid bowel movement with blood and mucus. I finally decided that I was just too sick and needed to go to the hospital. My husband drove me into the hospital and I was admitted but seen by emergency room doctors that are not trained in IBD. They can help, but it is not the same as a gastroenterologist. I stayed for 3 days with saline drip for hydration and Solumedrol which is the IV form of Prednisone and stronger. I improve and released. Back home trying to recover and see the new gastroenterologist, I get sick again and now have lost 30lbs in a few weeks. I head back into the hospital for stay February 2017 for a few more days. Same treatment. Go back home and again still not feeling well and can't keep anything in me. I am on Ensure drinks, water, electrolyte replacement, crackers. I head back into the hospital, March 2017 and now for ten days with a whole gastroenterology team, a colonoscopy performed, IV saline around the clock, Solumedrol around the clock, and new plan for treatment. I could eat Bananas, rice, toast, tea, applesauce. I was in heaven with the tastes. I really thought I was dying. So weak, pale, lost over 30lbs, and my hair was thinning. I was thinking at this time, just take my colon because I do not want to be in this pain anymore and go through life like this.
I was in contact with this new female gastroenterologist and she told me that I would start Enytvio (infusion). It is another biologic that is gut specific and works well on ulcerative colitis, but I would still stay on the Prednisone after released from the hospital while getting infusions at the beginning. I get discharged from the hospital and my first infusion begins April 2017 at a cancer center. I was very familiar with this cancer center as it was where I brought my ailing mother for her chemo before passing.
I go for the first infusion, and had blood draws which were the normal when you have this disease. I also was checking vitamin levels as I still felt so sick. The first infusion was uneventful and next was schedule. In the interm, I was told I was very low in Vitamin D, dehydrated, iron, and a couple of others. I was prescribed Vitamin D at a high dose for a couple of months, then over the counter Vitamin D3 everyday. I had to take B and C vitamins, drink more water, and eat what I can. I was feeling hopeful finally after a couple of years of being in a constant flare and sick. There are loading doses to the infusion for the first couple of months, and then a maintenance dose once every 8 weeks.
However, during this I was also having bad left leg pain in the rear of my calf. I had called my PCP and had a follow up from discharge at the hospital. He said that it was sciatica. I then followed up again the following week as I could not stand on my leg that long. Again, told it was muscular. I had a final visit to the PCP and said that I have some swelling now at the ankle and it hurts. He still said muscular. I then called the new and final gastroenterologist. She sent me for a ultrasound right away for it. I had no clue. This is the beginning of April 2017, and I did the ultrasound and the radiologist brought a doctor in the room and told me that I have a very extensive DVT blood clot down the length of my left leg from groin to ankle. I was lucky that nothing broke off and killed me. Wait, what??? Blood clots are common with IBD patients and especially if provoked like the hospital stay, dehydrated, vitamin deficient, on steroids,and so on. I am then admitted again for two days because of my UC with now a large DVT blood clot to be monitored. I am given blood thinners to take daily and follow up. Another pill to my life.
I now have an oncologist for the blood clot, the gastroenterologist for the ulcerative colitis, but wait it gets better. I only went to the doctor if I had an infection or physical and now I am making a team and on medications that I never heard of. I take Warfarin and it is monitored weekly to make sure that I am at the right level of blood thinning to prevent another DVT or blood clot. I had little follow up from the Oncologist except a D dimer blood test to see if I was at risk for another blood clot, but I was on anticoagulants, so who knows if that is a correct test. I am at their mercy. I have follow up ultrasound finally, and there is still some residual clot but much smaller than it was. Good news, but will remain on blood thinners. These little pills affect what you can and cannot eat due to clotting factors. So easy on leafy green vegetables, cranberry, and supplements. So, if it was not already dictating food with Ulcerative Colitis now I can add more with blood thinners.
I am finally feeling much better
I continued on my journey both with getting Entyvio infusions every eight weeks, and taking the blood thinners. Follow up colonoscopies and interval of the infusion moved up to every six weeks. Further colonoscopies and sigmoidoscopies and interval of infusion moved up to every 4 weeks which is the maximum. I finally weaned off Prednisone for good in January 2018. I am finally feeling much better, and my colon is improved, but not in remission. I have had a couple of polyps removed and not cancerous. Thankful these are caught at every scope to ensure they don't turn into cancer. Ulcerative Colitis is a precursor for colon cancer. Before going into one of my colonoscopies, March 2018, I had an episode of AFIB. Again, have no clue what this is or what is happening. I know gain a cardiologist and assured that I can proceed with colonoscopy but will be monitored if IV medicine is needed to stop AFIB. So, as I said above, I now have a team of doctors that I would have never seen coming in my life.
There is a lot of meat to this story, but trying to sum it all up as my journey. There is more that I am sure I missed, especially the scary colorectal surgeon meeting if in the event to remove my colon and rectum. Thank God that did not happen and modern medicine is here.
To this current time, my last colonoscopy was April 2021, and I had just a small left sided colitis, but the rest looked good. So, the plan was to remain on Entyvio as it really improved my colon, symptoms are minimal, and I have my life back. Bathroom trips are two to maybe three times a day. Normal bowel movements. My gastroenterologist I ended up with since my Entyvio treatment has been the best and understanding. She also saved me with the DVT blood clot. I have another colonoscopy due before April of 2023. I pray that I get good news. I have to take the blood thinners forever, as I now have a precursor to another one anytime there is inflammation. I have not let ulcerative colitis control me, but is sure as heck gave me run for my life. I started with my mother in this story as I feel the stress also contributed to exacerbated Ulcerative Colitis. I am now seven and a half years into this, 55 years of age and in full blown Peri-menopause which affects the ulcerative colitis. What a journey, but it has shown me a lot. Just waiting to hear the words "you are in remission" and I will be overjoyed.
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