Road to Diagnosis

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It certainly has been a long, exhausting, and terrifying road for me to get to where I am at now. Where I am at now: Diagnosed with severe Ulcerative Colitis, awaiting my second Infliximab Infusion, transitioning from Liquid Only Diet to Low Residue Diet, 34 lbs lighter, suffering from insomnia, experiencing joint pain, constantly fatigued, raging from Prednisone, not allowed to work, and still on bed rest.

First Symptoms

I guess when I look back, my symptoms started early March of this year; I believe that is when the unusual urgent bowel movements began. By late April, the urgent bowel movements had worsened. Mid-May, I was no longer having solid stools and my symptoms included constant diarrhea, blood in the stool, and difficulty controlling my bowel movements. This is when serious red flags started to be raised for me and I made an appointment to see my Primary Care Manager (PCM).

First Doctor’s Appointment

I explained to my PCM the symptoms that had been plaguing my everyday life: tiredness, diarrhea, light blood in stool, external hemorrhoid, and urgent bowel movements. He asked me about my diet, which I explained was rice, veggies, and lean meat every night. With the exception of an occasional pint of ice cream, I had a relatively healthy diet due to my tracking of macros and constant working out. Of course, my time spent working out and the intensity of my workouts had slowly begun to decrease due to my symptoms at the time. After assessing my diet, he inquired more how my bowel movements were. Through my description of my symptoms, he determined that I had Irritable Bowel Syndrome (IBS) and that the blood I was experiencing was from my hemorrhoids. He instructed me to stop eating rice, to stop eating bread, to decrease the amount of fruit I was eating, and to only eat berries when I did want fruit. He prescribed Bentyl and instructed me to pick up Preparation H for my hemorrhoids. Bentyl is prescribed to relieve muscle spasms in the colon and it was prescribed for me to take every six hours as needed for diarrhea. I made all of the suggested dietary recommendations. I cut back on sugar in general because I was told by my doctor that I was consuming too many sugars and carbs in one day. When I would have serious bouts of diarrhea, the Bentyl would help. I was still having an unexplained urgency to release my bowels. By early June, I had begun preparing for my Permanent Change of Station (PCS/military move). Therefore, I managed to power through the symptoms. I am no doctor and I am not qualified to diagnosis any medical condition, but there were never any blood tests ran nor stool cultures taken; I was diagnosed with only a description of my symptoms. Therefore, I felt like my doctor was not going to help me nor was he concerned with my condition.

Second Doctor’s Appointment (first doctor’s appointment at new duty station)

When I arrived at my new duty station in the United Kingdom, I decided to see a different doctor and medical team about my symptoms because I was concerned. I saw my new PCM on the 5th of September and he was immediately concerned and shocked that nothing was done before. He ordered various blood tests to check for inflammation, infections, liver functions, and various other possibilities. Additionally, there were many stool cultures ordered. While he was very concerned and ordered plenty of tests, he believed that I could continue to manage until things were figured out. Also, his wife was about to have a baby and my appointment with him was one of the last he had before going on leave.

First Emergency Room Trip

I was continuing to try and power through the symptoms as we awaited the results of my blood tests and stool cultures. However, my condition was only continuing to worsen. 16 days after my appointment establishing my problems, I developed an anal fissure that was causing me so much discomfort and pain I was bawling my eyes out on the toilet. Therefore, I called the Nurse Advice Line and was instructed to go straight to the Emergency Room. I had an examination. I was prescribed a cortisone cream and sent on my way. Additionally, the ER doctor had instructed me to increase my fiber intake to at least 25-30 grams a day. She had looked at my records and said that an increase in my fiber intake would help to relieve my diarrhea and constant need of the restroom. The next day, I went to the store and bought all sorts of food full of fiber to do as the doctor said. Had I known then, what I know now, I would have never done that as that is the exact opposite thing of what I should’ve done. You see, fiber causes your bowels to work hard and when experiencing an IBD flare up (what I was experiencing), you don’t want you your bowels working harder.

Second Emergency Room Trip

A day after my first emergency room trip, my left ankle began to irritate me for an unknown reason. I noticed the soreness and slight swelling on a Monday night at the end of my shift. So, I took some ibuprofen and iced and elevated it throughout the night. Tuesday morning, it was doing fine, but by the end of my Tuesday night shift at work it was swollen more. So, I repeated the treatment. However, Wednesday morning the swelling was more severe. That morning, I had a call from my PCM’s technician about my test results and I mentioned my ankle swelling. She scheduled me an appointment for the following Monday for “acute ankle swelling.” I had Wednesday off from work and managed to rest my ankle all day. Thursday morning, I attempted to stand and the pain caused me to yell out and completely crippled me to the floor. I immediately changed my “acute ankle swelling” appointment and was seen within the hour. I was seen by my PCM’s team and because of my high heart rate (120bpm) and my ankle, more blood tests were ordered as well as an x-ray. I was also given a set of crutches and had my ankle wrapped with instructions to put no weight on it (as if I could anyway). Later that afternoon, I received a call from the medical team that due to my inflammation markers I needed to go to the Emergency Room immediately. I was seen in the Emergency Room by an orthopedic surgeon who drained my ankle. There was no infection in my ankle, so I was given medication to help with the swelling and pain. I was also given orders to remain at home on bed rest. After four days of crutches, bed rest, elevation, and medication, my ankle began to get better and I returned to work. I was still on crutches, but I was back at work. Keep in mind that while all of this was going on, I was still experiencing, diarrhea, blood in the stool, urgent bowel movements, and abdominal pain. I was also beginning to show signs of anemia that included weakness, fatigue, cold hands and feet, and headaches.

Third Emergency Room Trip

I was in training at my new unit and continued to focus on the mission at hand, which was becoming increasingly more difficult as I was beginning to have urgent bowel movements 2 to 3 times an hour. I was at work for about three days when I began to have accidents on myself there. I had left work twice to change. I would clean myself up as fast as possible and then return to back work. I ended up having to buy myself more underwear because I had ruined so many pairs at work. It was on the day that I had three accidents on myself at work that I ended up back in the Emergency Room. I was given fluids because, as you can expect, I was extremely dehydrated. After receiving fluids, I was sent on my way yet again.

Third Doctor’s Appointment

I was seen by my PCM as a follow up for my ankle, but that was the only thing handled at that appointment. I was no longer on crutches and was given the clear to return to completely normal activity. I was also informed that while they had no idea what caused my ankle to swell, they did know that I did not have gout. (Later, I was told by a Gastroenterologist that joint swelling is another symptom of Inflammatory Bowel Disease.)

Fourth Doctor’s Appointment

Two days after my ankle follow up, I was seen again by my PCM for my intestinal issues as well as my anal fissure. When examining me, he found that I had a pilonidal cyst on top of everything else and it definitely hurt when he touched it. He prescribed me cortisone suppositories to help with my “very angry” anus. Another set of blood tests were ordered and a referral was placed for me to see a general surgeon about my cyst. He asked about my symptoms and I described to him that they were becoming worse and I was struggling to make it through a full work day. However, he did not have any instructions for me except to wait for the tests to come back, try using Immodium, and try to eat more fiber.

Fifth Doctor’s Appointment

My fifth doctor’s appointment was with the general surgeon about my pilonidal cyst. This appointment played no role in my diagnosis. We discussed my intestinal issues at length and she examined my cyst. I explained to her that other than causing slight discomfort maybe once a year and draining, I never even notice that it is there. She said that if we were to go through with surgery to have it removed, I would need to have my intestinal problems under control first. She also explained that recovery is approximately three months. After speaking, we came to the conclusion that surgery was not necessary, but if later down the road I wished to have it, I could choose to.

Fourth Emergency Room Trip

My left ankle had began to swell again. My symptoms were not improving (no surprise there) when I received a message from my PCM’s nurse explaining that the blood tests showed that my anemia was worsening and my inflammation markers were high. I was instructed to return to the Emergency Room. Additionally, there was a referral put in place for me to see a Gastroenterologist. During this trip to the ER, the words “Inflammatory Bowel Disease” were mentioned for the first time. The doctor actually felt my abdomen as well. He prescribed me six days worth of Prednisone (steroid used to reduce inflammation in the body) to help with my ankle swelling and to help with what he believed was inflammation in my bowels. My body responded slightly to the steroids and I noticed that my bowel movements were not as urgent nor as frequent for those six days. However, the prescription was abruptly stopped at the end of it and caused my condition to worsen.

Fifth Emergency Room Trip

I was brought into the ER under extreme diarrhea because I had to leave work again. I was given more fluids (of course), but I was also given a sedative that is used to treat nausea, but can be used to calm the intestines. I was given it through an IV in the ER and then given a prescription to take home with me. The pills helped tremendously, but mostly because it would completely knock me out for hours. I did not have to work again for two days, so that gave my body plenty of time to rest, but really I was just sedated in bed and absolutely miserable. During that time, I had scheduled my appointment with the Gastroenterologist for two weeks out and spoken with my PCM’s team about getting a prescription of the Prednisone.

Sixth Doctor’s Appointment (Gastroenterologist)

On the day I returned to work, I had been on the Prednisone for two days, but there were no signs of my symptoms being relieved. I called my PCM’s nurse and spoke with her about my symptoms and about my scheduled Gastroenterology appointment. Because of the severity of my condition, the nurse made some calls and got me an appointment that night to see the specialist. I left work early and rested at home until my appointment with the Gastroenterologist. I took all of my blood test and stool culture results with me to the appointment as well as a list of the medications I was currently taking. When I sat down with the doctor, I described all of my symptoms that I was having or that I had experienced. His notes included that I had the symptoms suggestive of “ quite severe inflammatory bowel disease” and my abdominal examination was “unremarkable.” He also noted that my inflammation markers from the blood test showed significant elevation. He ordered a colonoscopy for me as well as an MRI. Additionally, he told me to continue my dose of Prednisone in hopes that it would help relieve my symptoms and he instructed me to remain home for ten days. He instructed me that if the Prednisone did not start to help my condition, then I would need to be admitted to the hospital to receive it intravenously.

Sixth Emergency Room Trip

After being on the Prednisone for a week and suffering through the diarrhea, urgent bowel movements, severe abdominal pain, and overall lack of energy, I reached out to my PCM’s nurse. She made some calls and asked me to come into the Emergency Room to be admitted to the hospital. I, again, was given more fluids for dehydration. I spent five hours in the Emergency Room and then was told that I was “not critical enough” for them to admit me nor for them to send me to one of the local hospitals the base admits to. The doctor instructed me to go home and rest for the remainder of the day and then contact my Gastroenterologist in the morning to figure out where he admits to. So, again, I was sent on my way.

Seventh and LAST Emergency Room Trip (Admittance to Addenbrooke’s Hospital)

The day following my Sixth Emergency Room Trip was full of playing phone tag between my Gastroenterologist’s secretary and my PCM’s nurse. I did not get any clear answer about where to go or what to do until the following day when I awoke to a message from my Gastroenterologist’s secretary to go to the Accident & Emergency (A&E) Department at Addenbrooke’s Hospital immediately. (My experience in a British hospital will definitely have to be another post.) I was admitted through A&E to the Gastroenterology Ward on Thursday, 12 Oct. I was admitted due to frequent bloody stools, severe abdominal pain, significant weight loss, mouth ulcers, being febrile, dehydration, and suffering from tachycardia. Initial blood tests at Addenbrooke’s showed extremely high inflammatory markers and my initial X-ray showed features of colitis. I was immediately started on an IV of Methylprednisolone (steroids) and antibiotics. My diarrhea was still occurring 2-3 times an hour and I was still in severe abdominal pain. On Friday, my second day of admission, I was given a flexible sigmoidoscopy, which showed severe colitis with pseudopolyps. The inflammation was so severe that they did not finish the sigmoidoscopy for fear of damaging my colon. Friday wasn’t terrible because they sedated me for the sigmoidoscopy and I was in a level of sedation for most of the day. I was seen by the Gastroenterology team on Friday to be assessed; they were amazing people! I was given a chart to record the frequency, amount, type, blood amount, and color of my bowel movements. My condition improved slightly on Saturday. I received another X-ray, which was the standard for my first five days in the hospital as it is their protocol for severe inflammatory bowel disease. On Saturday, the Gastro team sat down with me again (they did this every day I was in the hospital). They spoke to me about the possibilities of a surgery and let me know that surgeons would be by. This day, I learned that while I was going extremely frequently, there was solid stool sitting in my bowels that was not moving. On Sunday, my condition started to get worse and I was experiencing more severe abdominal pain. I had a CT Scan completed on Sunday, 15 Oct. that showed colitis of the descending and sigmoid colon as well as colitis in the transverse colon. The surgeons sat down with me to discuss a full colectomy. Having my colon removed and living with a colostomy bag scared me and I discussed the options of only removing part of my colon, but because of the severity of my colitis and the medication that I had been on, a full colectomy would be the only option. The surgeons let me know that they were staying back for the moment, but that they were keeping an eye on my case. Additionally, on Sunday I was given packets of information about Infliximab. Infliximab is a biological drug that is used to treat adults with severe Ulcerative Colitis if others drugs have not worked. It is given as in intravenous (IV) infusion. After reading all the side effects, procedures, and how Infliximab works, I knew that I would much rather try this rescue therapy before making the decision of surgery, which is exactly what I told the Gastro team when they asked how I felt about trying Infliximab. I had blood tests conducted every day I was in the hospital and on Monday they showed that my inflammatory makers were no longer improving. As my symptoms were not improving and my inflammatory markers remained raised, it was determined that my body was not reacting to the steroids and that I would begin my Infliximab Infusion on Tuesday. Monday may have been the worst day of my entire hospital stay. I was given an extremely mild laxative Monday morning and Monday night was spent in absolute agony. Additionally, I was not allowed to eat or drink anything. I was receiving phosphates and fluids through an IV. I had 20 bowel movements in the span of 24 hours, which was my highest frequency during my hospital stay. Monday night, I was given two different pain medications because I was sweating and crying from the pain. Luckily one of them sedated me and I was able to sleep for a few hours. Tuesday, 17 Oct. was the day everything began to change for me! I was anxious for my Inflixmab Infusion because of the adverse and immediate reactions that can occur, but everything went off without a hitch! Tuesday was also the day I was allowed to consume “free fluids,” which only consisted of soup and water. I was weighed on Tuesday and it was discovered that I had lost four more pounds while in the hospital. I sat down with the dietitian and was prescribed six Fortisips/Fortijuices a day. Fortisips/Fortijuices are small nutritional drinks that contain about 300 calories each. Wednesday, my bowel movements were slightly thicker, with some soft solid, and without any blood. By Thursday, I was turning down the pain medication and having level 5 on the Bristol Scale bowel movements. Level 5 bowel movements consist of soft blobs with clear-cut edges that are passed easily. Thursday, I sat down with the dietitian for the third time to discuss a low residue diet because the Gastro team gave me the go ahead to begin transitioning to eat solid foods again. I was also told that I would begin my oral steroids on Friday and be released from the hospital on either Saturday or Sunday, which was astounding news to me! Saturday morning rolled around and I sat down with the Gastro team for what I thought was going to be the last time only to learn that there was a mistake in the administer of my steroids and I would not get to leave. I was supposed to be administered oral steroids beginning Friday morning, but instead I was given my dose through an IV. Because of this mistake, I had to stay in the hospital for at least one more day…yeah, I cried. However, Sunday morning I was told that I could go home! After 10 days in the hospital, I was finally able to leave and sleep in my own bed!!!

IMG_9454
During one of my 8-hour Phosphate Infusions

Diagnosis

49 insufferable days were between me bringing my symptoms to my PCM and me receiving an official diagnosis and treatment for my condition. The gap between my initial appointment in May and my diagnosis? 212 days. I left the hospital with paperwork describing my tests and my diagnosis. My official diagnosis is Severe Ulcerative Colitis. They took biopsies when I had my sigmoidoscopy and the tests came back as colitis. The camera showed that I had psuedopolyps, which are scar tissue in my colon. The scar tissue is caused from my body continuing to try to heal the ulcers in my body.

Colitis in Colon
I have Colitis in my rectum, sigmoid colon, descending colon and then a portion of my transverse colon (shown as blue in the image).

There are three main types of colitis: proctitis, left-sided (or distal), and total (or pancolitis).Proctitis is when it is just in the rectum. Distal is when it is on the left side of the colon, the descending portion. Total is colitis in the entire colon. Had the colitis spread farther, surgery likely would’ve been the only option.

7 thoughts on “Road to Diagnosis

  1. I am so sympathetic and disheartened by what you have been through. We never know what God has in store for us. I know you are a strong willed badass and if anyone can get through this, it’s you! I will be praying for your recovery and praying that you get the best quality of life because that’s what you deserve.

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  2. What a journey you’ve had! Honestly, some of it is exactly what I’ve been through- being convinced it was IBS, the blood was connected to haemorrhoids, being instructed to eat much more fibre (which included a horrible fibre drink twice a day!) the anal fissures… I must’ve went to about 10 doctors appointments before they made the referral for a scope! IBD needs to be taken more seriously EVERYWHERE, it’s so much more common than people think!

    Keeping you in my thoughts, hope Infliximab works! 🙂

    Steph (@fightinguc)

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    1. Thank you for taking the time to read through my long road to diagnosis. I am so sorry that you experienced similar issues. You’re in my thoughts and I hope your Infliximab works as well! 🙂

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  3. I read through your entire journey, your story is inspiring and touching. I had no idea what you were and are going through. Thank you so much for sharing this please continue to be the Amazing person that you are and never stop fighting.
    #stayblessed 🙂

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