Years to Diagnosis, Significant Impact to Mental Health
Like so many others, it’s been a long journey and I know I’ve still got further to travel. I’ve had pain since my early teens, went through a number of different diagnosis by different docs, endometriosis, appendix (which was removed), gastritis, IBS.
I used to end up in the hospital every 6 months or so with a mystery illness that no one could figure out. Pain always in the same side, right hand side above appendix. When in a flare, no food tolerated, high temp, fatigue, very loose bowels, some doctors said Crohn’s, then other doctors said not.
After 12 years of suffering, I was finally referred to gastro for a million and one tests including pill capsule that didn’t go down far enough as I was flaring. I tried to explain to doctors that pain was lower than where the pill had gotten to but they didn’t listen. The next day at work I collapsed in pain as pill had got stuck in me and had to be rushed to hospital (which happened to be a different one from where I had the original test, as I work in a diff place to where I live) They didn’t do pill cameras so they were confused what to do with me and the message never got back to original hospital.
Then had tubes down (that didn’t reach the middle section of bowel) and tubes up (that didn’t reach the middle section of bowel), I know this as previous pill capsule had identified a small polyp that didn’t show on either test, all results normal. The doc wanted to refer me to pain team as they thought nothing else was wrong.
Then my gastro doctor found that I had primary hyperparathyroidism, which is where a gland in your neck goes weird and means you feel really poorly, I had a lot of symptoms that weren’t typical of Crohn’s and this is how diagnosis was made. They did a blood test to confirm and they actually changed the way they complete blood tests at my hospital as this had gone undiagnosed for so long. A simple blood test could show I had this disease. I was admitted to the hospital for this and then had an operation to remove. Gastro doc thought this was the issue as this can cause aches and pains. I felt loads better after this operation but pain in tummy returned after a few months.
Back to same gastro doc, who wanted to refer me to a pain team as they thought nothing else was wrong with me. All very distressing. He did, however, request another pill cam as they had seen a small polyp on first and wanted to check this had not gotten any bigger. No flare this time and this was when Crohn’s was discovered. Then doctor confirmed blood tests always showed high inflammation and low albumin levels, which are typical of Crohn’s, for years. I was so mad as I felt for years they had disbelieved me. Tests started at 16 and the diagnosis was at 32.
Doc put me on tablets but these gave me awful heartburn and made me feel worse, so I decided to go without as my crohn’s is mild. I was used to the pain and felt it better to only feel poorly twice a year with a flare than feel ill every day from the tablets they put me on. Doctor discharged me and said go back if it worsens.
Few flares after this but mostly well controlled. I’m now 34 and since then I have had a kidney stone/infection including stay in hospital as side effect from the gland issue, I’ve also been diagnosed with high blood pressure (1 admission to hospital before came under control) and I have asthma (1 hospital admission).
All of this has meant that I suffer with terrible health anxiety which I am getting counseling for. The main reason is as they missed the Crohn’s for so long, I worry they will miss other more serious diseases, such as cancer or heart attack etc. I’m not sure docs realise the impact that diagnosing Crohn’s has on a persons mental health. I know my story is not unique and people have to fight to be heard or believed and it often takes years to get a diagnosis. For me it was 16 years!
It’s significantly impacted my life from a mental health perspective. You spend years feeling awful, doctors doubt you then you begin to doubt yourself and wonder if your going mad, then when you finally get a diagnosis and there is no apology or admission that they treated you poorly. The strangest thing is I felt relief when I was diagnosed as I knew something was wrong all along and I wasn’t going mad. How is it right that we should feel relief when being diagnosed with a debilitating life long disease!
Recently I’ve had new pain on the left side of my tummy, so have been back and had another colonoscopy and endoscopy. All looked normal although I’m awaiting for biopsies to return. I’m so scared that because it all looks normal on face value that I will have to start this journey again just because I’ve been feeling much better with no flare since I saw the doc and in the time the appointment had taken to come through.
Also may have arthritis caused by Crohn’s/psoriasis and I have eye issues which docs think could be Crohn’s related. It’s the gift that keeps on giving.
I honestly believe that we need to raise these issues in whatever forums we can so that doctors realise the impact they have on IBD sufferer’s mental health. I know it’s hard to diagnose, especially in the small bowel (where mine is), but a little more empathy and understanding would go a long way. I was a young girl, with no medical experience, who was a little overweight (again not typical for Crohn’s) so they didn’t take me seriously. I now understand so much from a medical perspective as there has been so much going on with me.
So my advice to you all is to stay strong and keep fighting to be heard. You know your body so don’t let anyone make you doubt your sanity and let’s keep sharing our stories in the hope that one day things will get better for people with this awful disease and they don’t have to fight like we do, love to you all xxx