Hi Nmandy and :welcome:
Oh my, I am so sorry, what a shock all this must be for you. :ghug:
Clash has given you fab advice hun. Could the diagnosis be wrong? There is always that possibility which is why it is imperative to have clear and solid answers. Having said that, if the GI is experienced with IBD and confident in their knowledge they can diagnose on sight alone.
There are two things that fit very neatly for Crohn’s. Your son’s age, the peak age for Crohn’s to show itself is 14-24, and the location. Crohn’s affecting the ileum (part of the small bowel) alone or ileum/colon represents the vast majority of cases.
My son was also diagnosed at 17.
He was much like your son and I well remember saying exactly has you have…”This kid has literally had a handful of sick days in his entire life.”
Matt had an episode of vomiting one night, was off his food for a few days and then another night of vomiting, that was it. Now the thing is I also have a daughter with Crohn’s and if it wasn’t for that I wouldn’t have come close to taking Matt to the doctor as his symptoms were so mild. As it was his CRP (a blood inflammatory was raised), all other bloods normal. They repeated a week later and it was further raised. The GP palpated his abdomen and could feel a mass in RLQ (where your son’s problem is) and he thought there and then he had Crohn’s. Ultrasound confirmed thickening of the Terminal Ileum and a few days later the GI confirmed Crohn’s via a scope.
Some people to have next to no symptoms when diagnosed. Is there anything else, when you look back on things in the past 12 months, that may have been a sign?
There were a couple of things with Matt:
1. About 6 or 7 months prior to diagnosis he complained of mouth ulcers. Not huge amounts, just one or two at time but he always had them. I started him on B complex and they went away. Never gave them another thought but mouth ulcers can be an EIM (Extra Intestinal Manifestation) of Crohn’s and the EIM’s can be present for months or even years before the intestinal symptoms or evidence shows up.
2. About 2 months before his diagnosis my partner and I commented on how tired Matt looked, he was pale with dark circles under his eyes. We found many reasons for this...juggling school and university and playing a LOT of competitive sport…but again, I think it was just another ‘silent’ symptom.
As hard as it is right now try and take a deep breath and wait until you get the biopsy results and have another consult with the GI before making any further decisions. If he is adamant it is Crohn’s ask the following questions:
- What is my diagnosis?
- Where is the disease active?
- What form does the disease take (inflammation, ulcers, fistulas)
- How severe would you say my disease was?
- What symptoms do I need to report immediately to you, which can wait until my scheduled appointment, and which signify an emergency?
- What treatment options are open to me?
- What does (treatment) do? What side effects should I be aware of?
- How long before I should see an improvement?
- Do I need to take any nutritional supplements such as b12 or iron?
A second opinion never hurts mum and if that is what you need to do to be comfortable with your lad’s health then do it. If they also say Crohn’s then having that validated is priceless. :ghug:
Good luck and welcome aboard!
Dusty. xxx