The next part of my Crohn's journey

Well as you all knew my Crohn's had been in a flare since March time this year and I had been in to have a colonoscopy and MRI scan in May. My results had shown that my combination of 6-mercaptopurine and allopurinol were no longer working for me. My consultant had to make the decision on what my next course of drugs would be as my Crohn's disease is medication dependent. Hearing this off my consultant of 2years was a shock as it is the first time someone has told me this in the entire 5years of being diagnosed. I can see why he had said this as every time my Crohn's flares up I cannot manage it by myself with my diet I always need to get intervention from my medical team and put on steroids or I am stuck in hospital on umpteen different drips and IV steroids. This time I had gone to my GP and explained everything and that was when she said it was my Crohn's as it was not my normal flare up symptoms I was getting it was different and now we know why as it had moved into my small intestine and was no longer active in my large intestine. So my last consultation with my consultant in June he said we were going to try Infliximab (Remicade) and if it does not work then I will be on my last available option which would be Ustekinumab (Stelera) before it would most likely be asking the guys in charge of trial drugs to get me on the list. I am only 26 years old and I have nearly ran out of options to control my Crohn's disease as I am medication dependent. I do not want to be kept on steroids for ever as I have been on Budesonide now for 5months and it has started to affect my joints as I cannot take calcium supplements due to me having a gene called familial hypocalciuric hypercalcemia (FHH) as my calcium in my body is higher than normal and I rarely have to take calcium now because of the gene. It is constantly monitored though to make sure it is under control as when it gets really high I suffer from more frequent headaches and I drink a lot and I mean a lot this is usually around 5litres a day. So on the 24th July I had started my infliximab journey and a week later I am struggling with the fatigue but I have started to see small improvements with my Crohn's but it is still early days and I have 2 more rounds before the frequency of my infusions is put to 6 or 8 weeks and then go from there.

This was my infliximab infusion last Tuesday and I told the nurses who were looking after me that it was my new friend (I hope it is anyway as I hope that it works for me then I can live a better live and hopefully not need to panic where all the bathrooms are when I go out).

Colonoscopy results

Well I had my colonoscopy on just gas and air. I was told by everyone in the room I was mad for not getting sedated due to the scar tissue in my descending and transverse colon from back in 2012/13 where they found it originally when I was first diagnosed with Crohn’s Colitis. But if I was sedated I would have to be kept overnight as I had no one to collect me from the hospital or stay with me overnight or look after my little girl so I decided I would not be sedated and just have gas and air. I was allowed to take paracetamol before my procedure so it was in my system. I think it had helped this time too as it was not as bad as last time when I was on gas and air when I last had my scope back in 2015 when Alisha was 6mths old and she would only come to me during the night not her dad as at that time she never slept through the night.

From what he could see he could see that my Crohn’s has gone from the descending and transverse colon into the caecum and terminal ileum and a bit further up but because a colonoscopy can only go so far up he would need me to attend my MRI scan at the end of the month to see how far up it has gone into my small bowel. But he has said I have Crohn’s ileitis and it is in a flare-up at the moment. 

Well the decision of my treatment has been given back to my consultant as I had got one of his colleagues doing my scope. His suggestions he has put in his report and he suggests infliximab and something to go along side it which is aimed at my small intestine as my Crohn’s from what he could see is mainly all in my ileum and a bit in my caecum in the large bowel where the small bowel connects with the large bowel and no longer in the colon. He did say at the end I would have to wait for my appointment in June for my consultants decision unless he contacts me before then if he gets my MRI results when I have it in a few weeks time.

From having being sedated for my gastroscopy and colonoscopy back in 2013 to diagnose me with Crohn’s disease and then going through it twice unsedated with only gas and air I have to say it is up to you in which way you choose as it is you going through the procedure. If I was to go through another one I would choose gas and air as you have no restrictions afterwards unless you have a load of biospies you might be in a bit more pain than if you had no biospies taken like I had none taken this time round as they already knew my diagnosis so to safe me extra pain and bleeding he decided not to do any and just take a lot of pictures as evidence of where my Crohn’s disease is and if it was flaring.

If you have any questions about anything you can always email me or leave a comment.