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Cuffitis Flare! How does it feel and what treatment am I trying...

I hear a lot about people suffering Pouchitis, but many don’t recognise Cuffitis. The treatment and symptoms are very different, so I wanted to share how a Cuffitis flare affects me whilst it’s happening.

To me Pouchitis is abdominal pain, frequency, generally a flu like feeling. It indicates inflammation in the JPouch and sometimes active ulcers similar to UC.

Cuffitis is different and often over looked, There is no indication if you will or wont suffer it, however I have had it chronic since my surgery over 2 years ago! Its been improved recently, until now...

Cuffitis – how does a flare feel?

My current flare started about a week ago, I was away camping and noticed the rectal pain I suffered too often was returning, it started feeling tender to pass stool and there was a dull aching feeling that grew. After a few days it progressed to a throbbing in the anus/cuff area, gas started to cause spasms as it reached the area and passing stool became painful.

So here I am now a week in, and it has escalated to extreme inflammation in the anus and cuff area, it hurts sitting especially on a hard surface. I can feel it throbbing all the time. I have extreme urgency and pain when I need to pass any stool, and this is happening as soon as anything enters my JPouch near the cuff. It can be so painful it feels like it may prolapse.

The irritation has caused horrible butt burn as it is so frequent and acidic. I am going up to 15 times a day which includes several night trips. Passing very little as its so swollen, I can’t evacuate properly, and it hurts so much to go I guess the brain also stops it. My output seems more acidic and liquid than normal and I never feel I have been properly.

On top of this I feel rough, I have a very sore throat, which is covered in small spots that hurt, my tongue is cracked and has a permanent film on it (which isn’t Candida as its been tested) and feel run down, my joints are swollen and hurt to the extent if I press on my elbow or knees, it hurts a lot, so I am stiff and tired.

Why does it flare?

So why has it returned with vengeance and what am I doing to heal it!

To be honest, I have no idea and blame myself mainly, I wish I knew for sure...

I have had a very active and fun summer, the heat has been extreme and the activities constant, from holiday with the kids to holiday to recover from that one, and then busy at home… I have been eating different foods as its summer and I’ve been in a foreign country and no doubt drinking too much alcohol.

So is it self-inflicted I hear you ask… well I don’t feel it is as I felt I was just keeping up with family but resting when I could. I avoided trigger foods as much as I could and before this, I was at 3-4 toilet trips a day and not at night, it was going well for a while.

What did I change…?

I tried a new sweetener in my tea, Stevia based as I researched it and no evidence was found to say it would upset stomach or bowel, could it of been that?

I am having a break from permanent antibiotics, but they are supposed to manage my pouchitis and stomach bacteria, so in theory would not directly affect the cuff.

I recently tried Symprove. A probiotic recommended to me by my surgeon, unfortunately this caused a terrible bout of gastritis (inflammation in the stomach lining), this went as soon as I stopped taking it.

It could be any of the above or a combination of all, sadly I’ll probably never know!

What treatment am I trying?

The last 2 days I have rested fully and continue to use suppositories all the time to manage chronic Cuffitis, this usually works fairly well, however, I am struggling to apply them at the moment as its so swollen and sore, also they make me need to go, so don’t always stay in at present.

I’ve started applying Xyloproct ointment, a combination of Lidocaine and Hydrocortisone acetate, just inside the anus and on the surrounding area. This numbs the area and helps reduce the swelling for a little while. Metanium applied to the area has also provided some healing to the burn and eases the pain a little.

I have stopped all probiotics and the sweetener and am eating ‘safe’ foods.

The Cuffitis has started to ease a tiny amount and frequency is reducing slowly. I am not sure what else I can do but wait it out, I don’t want to restart the antibiotics as I am seeing if I can live without them.

What now…?

I am seeing a new consultant in September for a second opinion before I have my JPouch removed and a permanent ileostomy. I have been having second thoughts over the summer as before this flare, I had a good few weeks where I was doing great!

I am on pain management and seeing the hospital this week for pain injections into to scar tissue to help resolve some of the issues I have.

This flare has reminded me how bad it can get. I will stay off the antibiotics as long as I can, I need to know if I can cope long term and if not, then the surgery is the only option!

Thank you for reading this, I hope it may help people recognise Cuffitis and ways to treat it.

I welcome any other ideas you may have to help the Cuffitis, the sooner I can reduce the swelling, the better so I can return to life!



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