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, 18 months ago now.
Today is the 3-year anniversary of my initial colon removal surgery and I am still fighting! So, what now, what have I tried and what are my options?
I have been using steroid suppositories since my colon was removed 3 years ago, yet I continue to suffer with disease in my remaining cuff, ulcers, inflammation and extreme pain in my JPouch.
My surgeon added in Salofalk about 14 mth's ago and the combination of them and Prednisolone has eased the pain in my cuff more recently, however it is due to the change in output that has helped my cuff pain the most I believe, not the suppositories.
I am permanently on treatment for Bile Salt Malabsorption, a tablet known as Coleselevam, 3 daily which has greatly improved the acidity of my output and dramatically reduced the irritation to my pouch and cuff, yet it continues to be in flare!
I started a biological treatment known as Stelara (Ustekinumab), 2 months ago now and have had the initial loading infusion and one follow up injection. I will take this every 8 weeks for the time being, however, I have yet to feel any change from it apart from a terrible immune system!
I have been on antibiotics for over a year now, initially Cipro and Co-amoxiclav on a monthly rotation, but for the last 6 months on just Co-amoxiclav as I suffered too many sever side effects from Cipro, and therefore decided to rest from it. I suffered mainly severe pain and swelling in my joints, not just normal disease joint pain (Enthesitis, which I also have recently been diagnosed with). The antibiotics dramatically slow and thickened my output allowing the pouch and cuff to heal. They took me from 20+ bms a day to 5-6!
So, what’s happening now!
I started the immune therapy as mentioned 8 weeks ago, since I have stuffed many ailments and illnesses as an effect of having a compromised immune system, however I have not seen any improvement in my disease. I have in fact had another severe flare of pouchitis for the last few weeks.
What does Pouchitis really feel like to me?
I started getting terrible abdominal pain, extreme bloating, gas so severe I was getting pain in my shoulders, tenderness in my stomach and pouch. I lost my appetite and my output gradually deteriorated to water and frequency that I hadn’t had in months on the Co-amoxiclav. I started to feel what I’d call ‘groggy’ flu like but no temperature, I just ached and couldn’t move without pain.
I described my pouch inflammation pain as feeling like I’d drunk glue, my insides were sticking together and each time I moved it was like stretching a wrinkled sticky balloon! It hurt a lot and I was moving round like I was double my age!
I didn’t even consider that my pouch would become resistant to the Co-amoxiclav, I assumed it was controlling it or cleared it up! After discussion with the amazing Pouch Nurses at St Mark’s Hospital, I agreed to try Cipro one last time! That is where I am now, day 5 of Cipro and so far great, I seem to be tolerating it for now but know from experience that can change in a week or so, I just hope its enough to get this flare back under control and the rest from the other antibiotics allows me to tolerate them again and rotate if needed.
The cuffitis is persistent and someday's it hurts more than others! If i miss a days suppositories I know about it, its kind of become the norm now! the dull ache, the stabbing in the anal canal, pressure when its bad and urgency when irritated by my gut! Its not gone but controlled with all the drugs!
I have tried Metronidazole (Flagyl) in the middle of all this, however I didn’t notice any improvement in my symptoms and suffered awful mood swings and anxiety so stopped!
Through all this my mental health has taken a battering! I suffer horrible paranoia, I feel awfully inadequate as a mum and partner, I feel useless and a burden to all!
I start to feel people are bored of me and I am all about the disease that there’s not much left of me to be of value to friends. I know these may all seen irrational to many, but to me I’ve been fighting so long, I’m bored of it, so I imagine everyone is! I’m not a reliable friend, I can’t party or keep engagements or make plans or even go for a spontaneous meal often!
I am helping my head as well as my body and treating this side with an increase to my maintenance antidepressant, without it the stomach acids kill me off more and the feelings can consume me.
So how do I cope?
When I am on the medications I am able to do most things with planning and care, I am extremely unfit and that is an issue, but I walk a lot and love the great outdoors, I am in my happy place half way up a mountain and that’s not always the best place for me to be, so I adjust! I struggle with chronic fatigue so now plan well, if I’m going out, I plan a rest day as soon after a I can. I am extremely lucky to have an amazing man and family at my side that understand as best they can and accommodate where they can.
This is the scary part for me! I am hoping with all my heart that the Stelara kicks in soon, if not I feel I have had enough, fought hard and lost! I knew going into this it was a risk that I may still suffer disease, but the odds were in my favour, so I tried. I couldn’t live back then with the what ifs, however, if I’m honest, lately I feel different!
I am an outgoing, lively person with a lot of inner strength but its burning out and I am at the stage I want my life back! If the Stelara isn’t successful I will be seeing my surgeon in March (4 weeks) and discussing surgery
For me it wouldn’t be a case of just de-functioning my pouch and putting back a stoma, because of the active disease I would need full JPouch removal and rectum removal. I would have a permanent stoma and a ‘barbie butt’ (kind of says it all). Its extensive and risky surgery and would probably be done in 2 stages, first a stoma then the removal when I was healthier and stronger!
I have dreaded this for the last 18 months but now am starting to feel it could be a good thing and can embrace it if it happens! My 18 months spent with an ileostomy stoma, AKA Fred, were some of the best in times in the last 3 years. However, the mental side is hard, the self-body image and the constant feeling of having something stuck to you is not easy. I suffered with the bag as well but know, with time, that improves, and I could cope if it allowed me to feel well and live life to the full again!
I have heard of new medications on the market and am sure they will help some, but for me Stelara really is my last stop before it wears me right down.
There is a procedure that is new to the UK but practiced elsewhere that may be an option which is the BCIR, however, I hear you can still get pouch inflammation so may be not ideal given my history of stubborn, bad ass disease!
I will keep positive and give Stelara a fighting chance but there is a bumpy road ahead, now I need to be positive and strong for I know I am not alone, I hope by sharing this, it helps others realise there are others there with them and for them!
My case is fairly unique, I took a judgement call and it may not have been right for me, but there are millions of JPouchers out there living full, healthy lives.
I hope something in this may help you or at least inspire you that there are always options, to keep fighting and look after the complete body and mind!