Fight on with my JPouch or have a permanent Ileostomy and Barbie Butt?Tough decisions ahead!

So, do I fight on with a JPouch or go to a permanent Ileostomy!

No contest I hear many of you shout! Keep the JPouch.... but why?



I have had my JPouch for just under 2 years now, I have full control, no leakage, no night accidents and can eat and drink reasonably well. So why change?

Well, since creation and connection in a single operation, almost 2 years ago, I still need suppositories every night, Mesalazine and Prednisolone, if I miss either for more than a day, chronic cuffitis, that I have suffered in one form or another (proctitis) for over 4 years, will rear its ugly head!


Cuffitis


So, what does that mean? For me, it brings pain, pressure, no sleep, extreme stabbing and burning feeling most of the time in my bottom. It’s painful to sit, sleep and pass poop, something that happens up to 20+ times a day at my peak. This also brings butt burn, sores and anal fissures which in turn, sting, burn, itch and generally drive me insane!

So that’s that part, I live on, having to pop 2 rather large gel-based pills up my bottom EVERY NIGHT, on my birthday, valentine’s day, on holiday, when I’m tipsy, when I’m about to go to bed with my partner and be intimate! All must pause for the application of the rubber glove, Vaseline and butt bombs!



I can live with this, I have for so long now it comes as regular as brushing my teeth, but what about the side effects of long-term use... well little has been said on that to me, but I know steroids thin the skin and that can be doing no good.

I am petrified of getting fistulas especially a rectovaginal fistula* due to the location of the continued steroid use, so far, I have been lucky enough to avoid.

* A fistula is an abnormal connection between two surfaces in the body, like a tunnel between two underground stations. In this case, the tunnel runs between the anus (or rectum) and the vagina. This tunnel allows the content of the bowel such as wind, mucus, bacteria or even stool to pass from the rectum into the vagina.


This part of my disease is managed and seems now, after almost 2 years post take down, stable if I maintain the above. That is until Pouchitis flares!


Pouchitis



What about Pouchitis, it’s not as bad as a full-blown UC flare by any means, however I am running out of treatment that I can use.


Pouchitis for me is a flu like feeling, I ache, have extreme fatigue. I have what I can only alike to a feeling that I have drunk a bottle of glue. My insides feel swollen, stuck together, raw, bruised, achy and nausea all the time. I get extreme tenderness and sharp pains in my lower and upper abdomen and I can get to the point of urgency and acidic output.


This is when the Pouchitis will enflame the cuffitis again and I end up tied to the loo all day and night. I have also suffered with the Pouchitis, extreme bloating and gas issues, to the extent the gas can cause pressure in my shoulders and stomach and be too painful to wear a waste band.

For this I have had to rely on Buscopan, peppermint capsules, windease gel capsules and peppermint tea. Codeine if the pain has been too much. The bloated pain can last weeks and causes me to completely lose my appetite and feel sick often.


Current Treatment

How I treat it has varied, I am actually stuck in permanent antibiotics and have been now over a year to manage the gut, this seems to placate any irritation and help keep inflammation at bay under normal conditions, I am also now on Stelara, an extremely potent immune therapy to suppress my system to stop my body attacking itself.

This is hopefully just in the stages now, after 2 doses, where it’s beginning to kick in, but has not yet, held off the flare ups. I have had one of my worse attacks of both Pouchitis and cuffitis just 6 weeks ago, shortly after my last infusion.

The positive result has been a dramatic decline in my faecal calprotectin levels, they went from over 2000, right down to 65 between the loading infusion and first injection 8 weeks later.


Stelara



The treatment I am currently following is my problem that is the driving factor in considering going for a permanent Ileostomy! I take as much and sometimes more medication daily, than before any surgery. I am on potentially life changing drugs and have experienced severe side effects.


As I’ve mentioned I’m on permanent Co-amoxiclav now and Stelara, I have also added in VSL#3, a prescription probiotic with over 450 billion liv