This entry is a summary of my medical journey from when the first symptoms of Ulcerative Colitis (UC) began to arriving at the need for surgery. For those who are not struggling with Ulcerative Colitis (or a similar auto-immune disease) causing them to care about these details, it may not hold a lot of interest.
Where It Began
I first began having symptoms of Ulcerative Colitis in November of 2015 when I was 26-years-old. At that point, I had no idea what the symptoms meant or that they would bring me to the place where I am at now – on the brink of surgery. My initial symptom was blood in my stools. I didn’t seek immediate help because, based on a previous experience years before, I assumed I had minor hemorrhoids and that it would pass. Two months went by, and it did not pass, so I ended up visiting my Primary Care Physician. She did not see signs of hemorrhoids, so sent me on to a Colon and Rectal Surgery Specialist. During his exam, the doctor saw inflammation and scheduled me for a colonoscopy.
The colonoscopy assisted in my primary diagnosis of Proctitis (inflammation of the rectum), and I was referred to a GI specialist for on-going treatment. My diagnosis still seemed minimal to me. The GI specialist assured me that this was not uncommon, and I was not alone – he said many people struggled with this condition and prescribed Canasa suppositories. The suppositories reduced the bleeding; however, once stopped, the bleeding quickly returned.
In May of 2016, my insurance plan changed to a high deductible plan that made the out of pocket cost for the suppositories over $1,000. This caused me to delay in my treatment. My condition didn’t seem to be progressing and I wasn’t in pain, so I didn’t feel treatment was urgent or a necessity.
It wasn’t until early 2017 that I went back to a GI doctor. I switched to a different doctor under a different healthcare provider so that all my physicians would be under a single provider. This ended up being a good decision – my current GI doctor is very knowledgeable, experienced and responsive. The doctor recommended a sigmoidoscopy, a procedure similar to a colonoscopy but that only looks at a portion of your colon – your sigmoid colon – hence the name. This allowed him to check the current status of the inflammation in a less invasive way. The procedure showed that my condition had progressed to a diagnosis of Left-Sided Ulcerative Colitis.
Ulcerative Colitis: An Auto-Immune Condition
This was the first time I began to really understand my condition. It was not simply being referred to as inflammation, but it had a name – Ulcerative Colitis – an auto-immune condition. Even so, I still had no pain and no major urgency at this point, only loose stools with blood occurring more frequently than the average person. I also experienced fatigue, but I didn’t associate it with the condition until later.
This doctor had other more cost-effective options, so I began an anti-inflammatory medication called Lialda before insurance disapproved it and I had to switch to Delzicol. Apparently, many insurance companies will only approve one or the other of these 2 similar drugs. I was also prescribed Mesalamine enemas. Delzicol’s maker provides a prescriptions savings card, so I only paid $30 for a month’s supply. The Mesalamine enemas cost over $300 out of pocket for the generic.
Neither of these medications put my Colitis in remission and the symptoms were becoming worse. They now consisted of abdominal pain, urgency, increased frequency, bloody stools, bloating, gas and major fatigue.
I began Prednisone for the first time of many in the summer of 2017. It, like all the others, did little to put me in remission. I have a separate post dedicated solely to my experiences with Prednisone that can be viewed here, but for now – know that I have a severe dislike for this medication due to its unpleasant side effects.
At this point, as Prednisone was not putting me in remission, nor is Prednisone a long-term solution, my doctor brought up trying a medication group called biologics – specifically Entyvio or Remicade which are given intravenously. I was VERY hesitant to go this route. Aside from reading about the potential side effects these drugs can cause, my younger brother who has Crohn’s was put on Remicade and had severe adverse reactions due to the creation of anti-bodies. I was downright terrified of trying these drugs; I delayed this process and began to see a Functional Medicine doctor.
I am all for naturopathic options, but my disease was pretty far along at that point and I was unable to stick with it. The process consisted of numerous labs to confirm diagnoses and see if there were any other factors in play. Once UC was confirmed, I began a specific carb diet and supplement regime, but I continued getting sicker. My symptoms had progressed to constant abdominal pain, nausea, fatigue and I began to vomit with the pain associated with bowel movements. I was unable to stomach the supplements, and a high vegetable diet was irritating to my already inflamed intestines. Drinking a sip of water would send me immediately to the bathroom. I lasted several weeks on this routine, but after dropping to 98lbs from 120lbs and being bed-ridden and unable to make it to work, I began taking prednisone for the second time.
The prednisone did not put me in remission, but it helped – it helped me get out of bed and off the couch, and function just a little bit – even if for just minutes at a time. I’ll never forget my now husband’s comment about an hour after I took the first dose and something made me laugh. He was so happy, apparently, I hadn’t laughed in a long time.
In addition to the prednisone, I was given a mild narcotic called Tramadol to help with the pain. The tramadol didn’t relieve the pain entirely, but it stopped the vomiting associated with painful bowel movements. The doctor increased me to 60mg of prednisone, and even the combination of these two drugs didn’t enable me to function in a standing position for more than an hour of the day. A heating pad and hot baths became close friends of mine.
Remicade & Remission
On November 19th, I agreed with my doctor to begin biologics. He recommended Remicade as my best option, as it is known to work quickly where Entyvio, though potentially safer, can take up to 12 weeks to work. This was a process all of its own as Remicade requires pre-approval from the Insurance company prior to infusion, so I had to wait an additional 3 weeks before my first infusion. I have a separate post dedicated to Remicade and my experience with this drug that can be viewed here.
At that point I began a near 2 month leave of absence from work due to the severity of my symptoms. In addition, I had a month left of classes for the current quarter of my Masters in Accounting program that I was fighting to finish while also fighting my Colitis.
My first infusion was on December 11th and it went seamlessly – I had no allergic reaction which is a big risk. I noticed a change in my stools within the first 12 hours – less blood, and more solid. However, I ended up in the hospital 2 days later with SEVERE joint pain in my knees. They had no answers for the reason behind the pain and swelling, and said it was too early to be an anti-body reaction to Remicade. Looking back, I believe it was one of many reactions I had from taking a high dose of steroids (Prednisone).
A day later, I ended up at the hospital for oral thrush that spread to my throat. I thought I had developed severe acid reflux, it hurt to swallow water, it hurt to swallow PERIOD. I fought going back to the hospital a day after I had just left and felt really dumb going to the hospital for what I believed to be acid reflux, but the pain was severe. It ended up being the right decision. I was put on anti-fungal medication that relieved the pain within hours. Prednisone lowers your immune system so you are more susceptible to infections, and from my research, thrush is a common one to contract.
Five days later, after believing I was improving, I had a really bad flare-up where I felt so sick – I couldn’t move, I couldn’t stop crying, I couldn’t think straight – something felt seriously wrong. I went to the hospital and was admitted with a pulse above 140, a white blood cell count of 40.4 (on a normal range of 4.1-10.7), and dehydration. I spent three nights in the hospital on IV steroids, antibiotics, and fluids. Right before discharge they gave me my second dose of Remicade.
I left the hospital, still very weak, but this was the beginning of a glorious 6-month remission for me. The Remicade starting working, I was able to return to work in January, I began gaining weight back, all my labs went back to normal, and I had no signs of antibodies to the Remicade. After the initial few doses that are done close together, I began receiving Remicade at 8 week intervals.
About 2 weeks prior to my 5th infusion, I noticed the Remicade seemed to be wearing off – I began having minor symptoms. A week later, blood appeared in my stools again. The infusion took place, but I received no relief and symptoms continued to worsen. The doctor said my blood level of Remicade was in the low-therapeutic range, so suggested increasing the dose. After waiting on insurance’s approval, I received a booster dose 17 days later with yet again no benefits.
Running Out of Options
This brings us up to current – from late April through now, my disease has progressed to a point that took it nearly 2 years to do before. I was back to abdominal pain, bloody stools, nausea, and vomiting with bowel movements. These symptoms have put me back in the hospital twice, mainly due to the dehydration that they cause. I had another Sigmoidoscopy on June 8th, 2 days after my 29th birthday. It showed the inflammation was severe. The progression between my first procedure in March 2017 and June 2018 can be seen here. (Not for those who are squeamish!)
There are potentially two more medications that could help me: Entyvio and Xeljanz. Entyvio isn’t a great option for the same reasons as before – its slow acting and can take up to 12 weeks to work and there is always the risk that the medication won’t work in the first place. Xeljanz was literally approved for UC the week before my most recent Sigmoidoscopy. Previously it was used for Arthritis. There are no studies of anyone taking the drug simultaneously with Remicade, so if I were to have chosen this route, I would have had to wait 8 weeks to get the Remicade out of my system before even beginning treatment. From my research, Xeljanz can take up to 8 weeks to be effective.
Both of these options would have taken significant time, time that my disease is not giving me. I also believe that these drugs would fail me in the future, this might not be an accurate opinion, but I could see myself a year down the road back in a flare after a short remission, searching for yet another option. I don’t like that image. To me, surgery is the best option to give me my life back. I want to live life to the fullest. There are things I want to do and living with a chronic illness makes doing anything very difficult.
I consider myself lucky. There are many auto-immune conditions that cannot be cured – they affect multiple organs and can have body wide symptoms. This surgery will cure me as the colon is the only organ impacted by UC. For this I am grateful, and I begin the process of preparing for surgery with a spirit of anticipation. The recovery will be long and is a little frightening, but I believe it will be worth it.
After meeting with a surgeon on June 18th, the first portion of my 3-step surgery is scheduled for Wednesday, June 27th.