I have written before about ongoing chronic cuffitis and more recently, pouchitis. I have suffered one or another since my JPouch was created and connected in one surgery, 15 months ago now. Finally I am seeing some light at the end of the tunnel so I wanted to share what’s working for me.
I have been using suppositories since my colon was removed over 3 years ago yet I continued to suffer with disease in my remaining cuff, ulcers, inflammation and extreme pain. The surgeon added in Salofalk about a year ago and the combination of them and Prednisolone has managed the pain more recently, however it is due to the change in output that has healed me most I believe, not the suppositories.
I have been on antibiotics now for almost a year, I rotate between Ciprofloxacin and Coamoxiclav, the initial plan was to switch each month, however, I didn’t tolerate each very well. The Cipro caused terrible joint and muscle pains after about 2 weeks, so I had to reduce to a half dose, then swap to Coamoxiclav, I could then tolerate them for about 2-3 weeks before it makes me feel sick and my appetite goes.
The reduced Cipro and constant rotating means it isn’t really enough to cure the problems, but it does act on my output. It slows my bowel down and reduces my toilet trips from around 25 bowel movements a day to 8-10 and the consistency is thicker.
Each time I rotate antibiotics, the effectiveness seems to be less each time, My outputs often explosive, gassy and acidic, this causes butt burn and irritates my cuff.
That was the case until I was diagnosed with bile salt malabsorbtion (BAM) about 3 weeks ago, I started treatment which was initially sachets of Colestytramine and now Coleselevam tablets. BAM typically causes many of the issues such as explosive output, urgency, frequency etc and within a few days of starting treatment, my output has again improved, its amazing, I no longer have urgency, pressure, explosive gas, watery acidic frequency.
With the treatment for BAM, I can now tolerate the antibiotics for the month, as planned, and my cuff and pouch are feeling less inflamed. I still can only tolerate half the Cipro. The one area I really suffer from still is enthesitis which is inflammation and pain in my joints, fatigue and lack of energy. I also rely on Loperimide to slow my gut.
I am now taking over 27 tablets a day which is a lot and each one brings it own side effects and issues. The next step is to start a new Biologic drug called Stelara, this is to get the inflammation under control, cure the Pouchitis and Cuffitis, and get me off the antibiotics. I also hope it will ease my enthesitis. I am due to start Stelara on 11th December 2018 and after a few months they will reduce the antibiotics, if it works i hope to stop them all together eventually.
Everyday I find something else to help me cope and enjoy my JPouch, even with the issues I still have, I feel positive for the first time in a long time. I am scared that once I start the Stelara, and I have to stop the antibiotics, it may all change again but I will do all I can to avoid future surgery!
I hope this helps someone else who may be looking for answers to cope with these awful problems that the disease still brings, even with no bowel!
I am apprehensive about changing what seems to work and going on biologics yet again, if you have used them for similar problems, please do leave feedback at the end of this post, any help is greatly received, thank you!
Keep fighting!