What next! I found out today I now have **Pouchitis on top of *Cuffitis...
Today I had a pouchoscopy at St Marks Hospital to investigate the current state of my cuffitis, I have been suffering now for over 9 months, the last scope 8 months ago showed severe inflammation and ulceration of the anal cuff. I was treated initially with Prednisolone and Mesalazine Suppositories, however these did not seem to be controlling the disease, I was swapped to Salafalk Suppositories once a day and Prednisolone ones twice a day.
I was suffering extreme urgency, frequency up to 25 BM a day and 3-4 at night, having extreme bloating, spasms and burning sensation in my cuff. I had some blood loss but not frequently and often due to a fissure (Anal tear in the lining of the anal canal).
7 months ago, my surgeon prescribed me Diltiazem to help with spasms and heal the anal area as well as started me on my first course of Ciprofloxacin antibiotics, this was to help thicken my output and control the bacteria in my gut and was to be used long term if successful.
I researched many methods others had tried and discussed my findings with my surgeon, I found a patient that had similar issues to mine, whom had tried steroid injection directly into the cuff under anaesthetic, this was agreed as worth a try and I had Depo-Medrone injected under general anaesthetic in February (7 mths ago).
Unfortunately, the injection offered no relief and therefore I continued the suppositories and antibiotics.
Over the next 6 months I continued to suffer from cuffitis, and as well as the above symptoms, I also started to feel generally unwell, extremely fatigued and found that after 2 months of the antibiotics I suffered awful side effects. The Ciprofloxicin was causing chronic joint pain, stiffness and effecting my tendons and ligaments, it was also becoming less effective at controlling my output! I consulted with a specialist at the hospital and under review, was advised to try alternating Cipro with another antibiotic, Co-Amoxiclav, monthly.
My cuffitis seemed to be easing and the symptoms where less, however after a month on the Co-Amoxiclav, I also started getting nasty side effects, it’s effect and controlling my stomach bacteria and output was fading. I had got down to 5-6 BM a day and 0-1 at night but it was starting to climb again, fast!
I reduced my suppositories to alternate days as the pain was easing there, then it all started to niggle.
I am now rotating the antibiotics on a 2-weekly basis, this seems to now be the threshold where they are effective, and I manage a good quality of life. However, I cannot maintain this much longer as eventually they will stop being effective all together!
Today I had another pouchoscopy... it revealed what I feared, the disease has spread into my JPouch and now I also have pouchitis, as I am already on the antibiotics that is normally used and I’m resistant, my consultant is discussing either trying more biological drugs, bearing in mind I’ve already had Infliximab to which I’m now allergic to, and Humeria, that stopped working... I don’t know how successful they may be. The alternative is no better... bask to an Ileostomy and remove the JPouch, this is a huge surgery with extensive risks and must be done with open-surgery, not laparoscopically as my previous stoma was done, and not single incision as my JPouch was done. But the risk of cancer is high if it’s all left in disconnected as it’s so infected.
I see Professor Hart in 2 weeks and just pray that with increasing my suppositories and rotating the antibiotics, I can manage it until then!
They did point out to me today that considering I had my Colon out to get me off lifelong failing medications and nonstop flare ups, I seemingly am no better off... I guess only the next few weeks will tell!
There were a couple of humorous points to the day! They gave me the enema, THEN told me the toilets were blocked… so there’s me, running down the corridor, gown flaring open and flying into the changing room loos with such force I nearly knocked myself out! Secondly the hospital issue pants, With the trap door behind :O.
*https://en.wikipedia.org/wiki/Cuffitis
Cuffitis is inflammation at the anal transition zone or “cuff” created as a result of ileal pouch-anal anastomosis (IPAA). It is considered a variant form of ulcerative colitis that occurs in the rectal cuff. Cuffitis is a common complication of IPAA, particularly when a stapled anastomosis without mucosectomy procedure has been used.
**https://en.wikipedia.org/wiki/Pouchitis
Pouchitis is inflammation of the ileal pouch (an artificial rectum surgically created out of ileal gut tissue in patients who have undergone a colectomy), which is created in the management of patients with ulcerative colitis, indeterminate colitis, FAP, or, rarely, other colitides.