My Ulcerative Colitis Diagnosis
I have always had bowel problems. I remember as a child I used to go to bed crying with stomach pain and get really bad stomach aches all the time. Eventually, they just kind of went away until they started to come back when I was a teenager. I had learned in my early to mid-teens to not eat certain foods as they had bothered my stomach a lot. The main culprits were dairy, red meat, and spices. By my mid-teens, they were cut out and my bowel and stomach pains had improved, until things started to go backwards again.
To understand my long and painful journey to my diagnosis with Ulcerative Colitis, I am going to have to begin with when I had started seeing doctors when things began to go wrong and did not improve.
In late 2017, I began taking the contraceptive pill. However, I was one of the unlucky people who had a reaction to the pill. Over the course of a few weeks to months, I began experiencing really bad chest pain, heart palpitations, stomach pain, chest pain radiating into my left shoulder and upper arm, and difficulty breathing to name a few. This became progressively worse over the months to the point where I thought I was having a heart attack several times. In April 2018, I had stopped taking the pill and went to my GP, who agreed I should have stopped taking the pill and had done a few blood tests. This revealed I had an underactive thyroid and anaemia. The doctor did not immediately prescribe medications for my underactive thyroid because an underactive thyroid can cause anaemia, but anaemia can also cause an underactive thyroid. So, I had to take iron tablets for three months and repeat my blood test.
Fast forward to the blood test repeat, my iron levels returned to acceptable levels, yet I still had an underactive thyroid which was going further out of range. However, at this time, there was a new doctor. My previous doctor was a locum doctor who had left that practice, so now I was seeing the locum doctor who had filled his office. I had to have two repeated blood tests to make sure “I really had a thyroid problem”. After ringing to get my blood test results, this doctor wanted to see me to do a thyroid exam where they check you neck and feel for nodules and things like that. However, by this point I was feeling terrible, really bad fatigue, achy joints, weight loss, among other things that I was able to fill a small copy page with and brought it to the doctor’s office with me (these are all symptoms of the beginning of autoimmunity problems). This was approximately around summer to autumn 2018.
At the doctor’s appointment, I brought up how I was losing weight. However, this doctor was not too keen on listening and accepting this problem because I was still technically within ‘healthy weight parameters’ for my height according to the BMI Index. This doctor proceeded to tell me that:
- I was not actually losing weight because I did not having the money for a full new wardrobe of clothing.
- I did not ‘really’ have a thyroid problem if I was losing weight.
- I was losing weight because breasts enlarge during menstruation.
Yes, you read them correctly.
Due to his rude, dismissive, and patronising comments, I did not show him the rest of that sheet. Safe to say, I never went back to that practice.
After this I began to notice bowel changes. Nothing major, just a lot of mucous and alternating mild diarrhoea and constipation. However, around this same time I had started experiencing extreme abdominal pain on and off. This would be a burning pain that would wrap around my abdomen and push upwards and wind me. Most of the time, I could not eat, breath properly, move properly, etc. In between breaks of this extreme pain, I would have constant abdominal pain, discomfort, and problems eating food.
In late 2018, I changed doctors to a new practice because I began getting really bad breast cysts and did not want to return to that same doctor. In November/December 2018, I went to my new practice to have a breast check. Everything was fine, but I had to go back for a recheck a few weeks later which was about the end of January in 2019, after my final year Christmas exams. At this check-up appointment, I had brought my bowel changes, extreme pain, and weight loss to my doctor’s attention. Initially, my doctor had a few possible theories:
- Helicobacter Pylori bacterial infection
- Gallbladder issues
- Coeliac disease
Although, her main theory was the bacterial infection. So, in January 2019, she referred me to the hospital to test for this infection. My referral appointment date came in for 6 months later. My appointment was not until the beginning of June and thankfully a few days after my final year exams, so it did not interfere with them. While waiting for this test, my doctor also done a blood test to check for coeliac disease when I went back for my routine thyroid blood test check-up. Not really much of a shock, I was not and am not coeliac.
However, just a week or two after that appointment in January, I had started to lose blood when going to the bathroom. Initially, I blamed the blood loss on non-existent haemorrhoids and when after a few weeks it only increased, I tried to ignore it. This was happening while my other symptoms were getting worse. By the time summer had rolled around, my extreme abdominal pain had gotten significantly worse, I was losing just blood by itself- not even mixed- just blood alone, I was having diarrhoea, going multiple times a day, had extreme urgency, losing more weight, I was very limited in foods that I could tolerate, just to name a few symptoms. I was hoping this was just the possible bacterial infection I had. Two weeks after my hospital appointment, the test results came back negative.
Honestly, this kind of broke me a little. The test results came back negative and I was experiencing all of these horrific symptoms that never let up and only continued to get progressively worse. I became very fed up and a little hopeless seeing as I was over a year going to doctor(s) with no results, no answers, no real idea as to what was happening. My mental health and attitude towards what was happening really took a hit.
In late August/ early September, I began my Master in Education to become a secondary school teacher. However, given the symptoms I was experiencing, I should have never started this course when I did, but without a concrete reason/diagnosis, I could not just do nothing either. So, I had started my course and my symptoms got significantly worse. Yes, they can get worse that how they were above. They were really horrific at this stage. I could fill cups daily just on blood loss alone, I was having to force feed myself food because it was just too painful to eat, I was in an extremely severe amount of pain, had lost more weight, was really weak, among other symptoms, resulting in me missing work and college quite frequently- understandably so.
I visited my doctor again on the Halloween break (2019), the only few days I could be off from placement or college. Before my appointment, I sat down and wrote down every symptom I was experiencing because I would have definitely forgotten most of them. I filled two small copy pages with bullet points of all my symptoms which I had handed to my doctor to save some embarrassment of talking about ‘toilet issues’. I also think I was that exhausted and weak that if I had to have said every little thing, I would have just broken down in her office. Of course, my doctor was more than a little angry that I did not go back to her before hand (during my little rut over summer)- she is one of the good doctors guys. After asking me several questions, she did not feel the need to perform a rectal exam (thank god) on me, suspected ulcerative colitis, and referred me urgently to the hospital.
Even with an urgent referral, my colonoscopy appointment was not until the first week of December, five weeks after my doctor’s appointment. This kind of referral is very quick for any sort of hospital appointment, however it felt like a lifetime to me. My symptoms were getting worse again- yes again. By the time my scope test had rolled around, I was vomiting and passing out with pain, I could barely stand, never mind walk 10 minutes, with how much weight I had lost, blood I had lost, and inability to eat. The only thing I could manage to force feed myself (and still not very well) was rice because it was the easiest thing on my bowels. I truly believe that if I had not of had that appointment when I did, within days to weeks I would have had to have a colectomy from toxic megacolon. Toxic megacolon (in uc) causes your colon to expand, dilate, distend, and rupture from the inflammation.
My scope revealed severe pancolitis, the most severe and developed form of autoimmune ulcerative colitis (before toxic megacolon). After my initial colonoscopy, I began and completed two courses of high doses of steroids, had an iron infusion, take 5ASA (a type of anti-inflammatory) daily, and inject biologic therapy immunosuppressants to help manage my disease.
They were able to conduct a calprotectin test (a measure of inflammation) in which mine exceeded >1000 when normal ranges are between 10-50. I do believe my calprotectin levels were significantly over 1000 (the hospital just measures >1000) because during July 2020, I conducted another calprotectin test after feeling increased symptoms for several weeks. My calprotectin levels then were over 700. After a prompt sigmoidoscopy, it revealed I had severe inflammation in my lower bowel (not my entire bowel like before) and my symptoms during this flare, had absolutely nothing on flare I had experienced leading to my diagnosis. Furthermore, in January 2021, m calprotectin levels were close to 900 after having changed biologics and received two infusions. Again, these symptoms and numbers did not compare in the slightest to when I was diagnosed.
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