As I have written previously about the issues I am having with my JPouch, I have today, finally, seen my consultant and surgeon to discuss a plan to move things on.
I have been on Stelara (Ustekinumab) 5 months, 3 doses now, and have been struggling with how my disease is reacting. I have had 3 major flares ups of symptoms recently and been dependent on Coamoxiclav and Ciprofloxacin for the last year. So, what exactly has happened since I started Stelara?
I have charted the last 5 months and recorded that I have had just 66 good, healthy days, when my pouch has behaved, and I have been relatively pain and symptom free. This is great except this means, unfortunately, I have had 67 days with one or several of the following issues; abdominal pain, watery output, bloated and extreme trapped gas, frequency, pain in my cuff or high up stomach pains!
I have also had over 42 days ill with one or more of the following; cough, cold, sinusitis, headaches or positional vertigo.
The part that's confusing me most is how I have been medically... Before I started Stelara, my Calprotectin levels were in excess of 2000 (normal is below 50), and now 5 months on, they have hugely improved and are now just 66. I have noticed over this time my pouch function has improved; my output is reduced to an average of 5-6 BMS a day on a good day. I had little or no pressure feeling and no urgency. I can eat better and was only up once at night. This is all on the good days which are about 50% of the time.
Things, however, have recently changed in other ways as well, whilst my pouch is functioning well, I am having other symptom flares, these have changed more recently to terrible high up stomach pains, a feeling of fullness and less appetite. I get the pain in my pouch at first and it feels tender and sore, my output deteriorates and sets off the cuffitis, then the pouch function drops and the output goes awful, this is when I have started Ciprofloxacin and stay on it as long as I can tolerate the side effects, then I go back on the Coamoxiclav for maintenance. At the moment I have a constant pain and discomfort in my stomach up high in the area between my ribs and belly button.
Today I have met with my surgeon and consultant to discuss my options, they are currently arranging for me to have several urgent investigations to see what is going on, these include a small bowel MRI, a JPouch scope, a camera down my throat into my stomach and a scan of my Gallbladder. Hopefully this will all shed some light on what’s happening.
If all the tests come back clear, with no explanation of why my symptoms are not good at the moment, then I need to decide if there are any medical changes I can make to cope and carry on to see if the Stelara settles down, or SURGERY!
My surgical options are few, most likely I will have my JPouch and remaining rectal area removed and closed and a permanent ileostomy stoma formed. I have asked regarding the potential of exploring the BCIR surgery, however as my hospital does not carry this out, I will need to be referred to Oxford to discuss further should I wish. My surgeon, however, is not an advocate due to the lack of knowledge of this procedure in the UK, lack of after care and extreme complications possible.
So now I sit and wait, I am tolerating the Cipro so Ill carry that on longer and hope to hear in a few days regarding tests!
This feels the most positive move forward to decide on the future healing or removal of my JPouch, scary options but now a realistic plan can be made. I feel positive.
I hope by sharing my story I can give hope and help others facing similar dilemmas. There is always hope and never give up!
Say strong and keep fighting.