Hello everyone,

I hope you had a Happy Christmas and New Year's eve.

I was diagnosed with cuffitis 12 days ago and responded quickly to the pred suppositries and hydrocortisone foam. I was overjoyed as this meant I could enjoy Christmas pain free and get some sleep. Although I bled slightly, all other symptoms were improved.

Unfortunately things have taken a turn for the worse and I would like some advice please. I think the start was trying vsl-3 for the first time two days ago. I became really bloated and had painful cramps with tonnes of gas that built up during the day and were worse during the night. I could feel the pressure pushing down on the cuff and it hurt. I didn't sleep much and was up to the toilet lots. Each bm became more painful and the amount of blood increased. I have a fissure too that I treat with diltiazem, which adds to the pain.

I didn't take the vsl-3 yesterday and the bloating/cramps have stopped. I slept through the night fine. However, it is very painful whenever I try to pass a bm (like trying to push a cushion through the eye of a needle) and I have started passing blood again. It often feels like I'm not emptying fully.

I'm really concerned that I am no longer responding to the rectal meds. How long should I give it before reaching for oral steriods? That would be a depressing start to the new year.

I can't help feeling that the increased gas and pressure a couple of days ago has had a negative impact on the fragile, healing cuff.

Should I give it longer with the rectal steroids?

Is it possible to keep cuffitis at bay longterm?

Can ongoing inflammation after takedown, whether that's in the pouch/cuff, skin, eyes, joints etc eventually resolve or calm down overtime or does this mean the pouch prognosis is bad?

I am 5 weeks post-takedown and feel exhausted when I think of the years stretching out before me with this continuing battle with inflammation. My hair is falling out and my eyes are sore, which always happened with UC.

I keep thinking that I should just take back control and go for an end ileostomy. I want my life back and the thought of this continuing in ever decreasing circles depresses the hell out of me. I'd been really looking forward to the New Year and putting all this illness/pain behind me.

Sorry, rant over.

Many thanks for any advice you can give

Harper

If it were me, I'd forget about the VSL until your fissure was healed. Ditto with the rectal meds (except for the diltiazem and maybe the proctofoam). The side effects of the VSL seem too much while the fissure is healing, and inserting suppositories can further traumatize that healing tissue. It is the fissure that is causing most of your pain, as fissures cause spasms of he sphincters. How about some oral mesalamine (Azulfidine, Asacol, or Pentasa) to treat the cuffitis while you are waiting for that fissure to heal...which can take a couple of months?

Jan

Thanks for your advice Jan. My gastro and surgeon are resisting oral meds but things seem to be settling down. I think the blood is from the fissure so I need to be patient and wait for it to heal

Harper