Updated: Sep 17, 2018
'...Pouchitis and Cuffitis! what are they and how does it feel to have both! What next...
2 weeks after publishing the above mentioned blog on 22nd August 2018, I was admitted to the bowel ward Fredric Salmon at St Marks Hospital, I went to A&E because I had had extreme pain for over 3 days that was getting worse, it felt like I had inflammation in my complete stomach and abdominal area and it was excruciating.
I was admitted for testing for C Diff as I was extremely gassy, bloated and had very acidic output, however I was not having frequency or urgency, just constant pain that hurt to move and especially touch my stomach.
The C Diff came back as negative and as I’d had a small bowel MRI recently and it’s already known I have inflammation, they decided not to take further scans and kept me in for monitoring and rest. I had no appetite and felt extremely queasy. They ran tests on my output for bacteria overgrowth and I have yet to hear the results!
I stayed in hospital for 3 days and eventually my specialists decided I’d most likely had a partial blockage possibly due to the inflammation from current cuffitis and pouchitis, over the next 3 days eating very little and resting, the pain and swelling eased. On the 3rd day I met with my consultant as planned previously to discuss my options, by now I felt fed up of it all and wanted it all gone! I’ve had numerous issues and needed an answer for relief as I was exhausted with it all.
My bloods showed some elevation of white blood cells but nothing new, my consultant and surgeon both felt that I was a good candidate to try further treatments to save my JPouch before considering its removal.
After a lengthy discussion regarding various medications such as budesonide and Metronidazole (which I didn’t like the side effects of years previous) they agreed to prescribe Rifaximin and stop the Cipro and Co-amoxiclav as they were clearly not working and try something new.
Biologics were discussed and whilst I had heard alarming stories about Entyvio (Vedolizumab) in the press, I agreed to think about it alongside considering Stelara, they are very different forms of biologics to those I have had previously, Infliximab (Remicade) and Humira (Adalimumab), and have some promising results in cases similar to mine with stubborn JPouch disease problems.
I have now been on Rifaximin for 5 days and the early indications are fantastic, I have slept through for 4 nights and my BM’s are down to 4-6 a day with no urgency and very little discomfort, I am still experiencing some of the pain in my cuff from the inflammation but much less than previous weeks, I continue to use the Prednisolone and Salofalk suppositories daily but the early signs are amazing! I have completely stopped the other antibiotics and reduced my Imodium from 14+ down to 8-10 a day. I still get gas with pain, from certain things and especially if I don’t eat regularly, but I am on a slightly ‘low residue’ diet to ensure the blockage is totally cleared and the swelling it caused heals well.
*again a day later! Been up all night in the loo in pain, my initial thoughts were another partial blockage, however, now I’ve been in and out of the loo all day! Pain, urgency, gas, spasms and frequency, I’m starting to think maybe the Rifaximin isn’t working so well! I have given up a little tonight and doubled up adding back the Cipro in a desperate attempt to calm it back down, I’m hoping in a few days I can drop it once more and test the Rifaximin properly! So the jury is still out! Cuffitis and Pouchitis in full flare yet again...*
I have carried out research into the 2 biologics and from what I understand the risk I was concerned about with Entyvio, which is a rare brain nerve disease, is only a risk, and to date has not occurred. It is a very newly licensed drug for Crohns and Colitis and so evidence and outcomes is limited but promising. The Entyvio works only on the gut and does not suppress your complete immune system where as Stelara, which has been around for many years for other diseases, effects the complete immune system. This for me has its pros and cons as that would also alleviate inflammation of joints and other symptoms of IBD that I suffer from, however it would also weaken my immune system over all and leave me potentially exposed to infection and complications. The consultant was confident that due to the behaviors of my disease since surgery that both would be suitable.
I have decided to start Entyvio, I am confident it is different to previous biologics I have tried and therefore would be a more likely effective treatment a this time.
I am undergoing blood and X-Ray screening for the infusions and awaiting to hear if I am accepted onto the treatment, It is extremely costly to the NHS and is not always available.
The symptoms and how I was diagnosed etc... is covered in the earlier mentioned post dated 22nd August 2018. If you are concerned you may have similar issues please see your medical practitioner and discuss options suitable for you. This blog is my experience and is not advice or a medical diagnoses. I hope hearing my story has helped you, please leave a comment down the page and thank you for reading!