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 live bacteria per sachet, and I take 2 a day, in an attempt to repair the damage the antibiotics do to my gut flora, which is already non-existent as my gut transition is a matter of hours so no healthy bacteria can survive.
When I have a major flare it generally means the Co-amoxiclav is not enough and historically I have had to swap to Ciprofloxacin. This works amazingly well to heal the problem; however, it comes at a huge cost.
Side Effects
Ciprofloxacin causes me to have extreme joint pain and I am put at risk of tendon ruptures, more recently I suffered an acute pressure headache that even now, 4 weeks later, I can still feel to some degree. Because of this last side effect, I was told to stop it immediately and potentially not use it again.
Metronidazole (Flagyl) is another favourite for treating Pouchitis, however, for me I have never noticed a huge relief and unfortunately it causes me to suffer depression and mood swings. Therefore, I have avoided using it for mine and my family’s sake!
I have tried Rifaximin (Xifaxan) but sadly that gave me diarrhoea rather than stop it so ceased after a week.
This all leaves me in a tight spot should I flare again! I managed for the first time ever recently a week off the antibiotics all together, this is the longest I have managed since take down which is encouraging. However, my pouch started to misbehave so I’m back on the Co-amoxiclav for now and all is calm!
I have kept a diary of symptoms since starting Stelara, alarmingly, I have had out of 95 days, 47 in pain with either urgency, pressure or extreme bloating and feeling ill. I have also had 3 colds, positional vertigo, sinusitis, pressure headaches, oral thrush 4 times and the worse flare of Pouchitis so far! The other days have been good, but I still find the fatigue a huge issue throughout and never fully escape some minor discomfort.
What are my surgical options!
Well unfortunately, I am not in the know for that, my surgeon appointment was cancelled last week, and my consultant is proving hard to pin down! I am waiting urgent rebooking but who knows! I just pray things behave! I have my next Stelara shot this week and feel it’s well timed.
I believe my surgical options to be a permanent Ileostomy and full removal of my JPouch and cuff, it cannot, I believe, be left in de-functioned as it is constantly inflamed. Between my temporary Ileostomy and JPouch surgery for the 18 months gap, I was still dependant in the steroid suppositories.
De-functioning the JPouch and not removing it, would leave me at a very high risk of cancer, therefore if reversed, I’d want it gone. I dread the thought of a ‘barbie butt’ most I think in all of this as I’ve heard so many that have complications from that surgery.
My Temporary Ileostomy
I had a great functioning Ileostomy stoma before, however, surgery has left that area scarred and with an extensive dent in my abdominal wall, this could cause a future stoma to have leaking issues and trouble with bags sticking due to the shape of the area now.
I hated having a bag! It was itchy, sore and irritating, hot, time consuming and in my opinion, made me look fat! I felt less attractive and more self-conscious, I couldn’t tolerate any waste bands on clothing and found it a pain to sleep with. I was up every night as it would inflate and need emptying as I always feared it would leak or explode if I lay on it.
On the positive side, I had energy, I was able to work, holiday, swim, exercises and live well. I ate and drank everything and had more good days than bad! I was on minimal management medication such as vitamin supplements and loperamide.
Next...
So here I am now... what next! I have all this in my head, on the 48 days of my diary, I felt good, never great, always lethargic and with some degree of discomfort daily but manageable and probably an acceptable standard of life.
Much better I know than some sufferers I read about, but is it enough for me? On those days, yes, I think so. I need tpo learn to accept what I have and not be so angry as much at myself for my limitations. The guilt I carry for being ill is immense and I know I need to talk about that one day with someone in order to move on, but I’m not there yet.
I live in limbo now waiting for my surgeon and consultant to fit me in, whilst I hope with all my heart that I don’t flare again. I honestly have no idea how to treat it without Ciprofloxacin, but with its black box warnings and serious side effects, some I’ve encountered, I’m petrified of it.
I’ll keep fighting and hope that some of what I have written may give comfort to others to know they are not alone and understanding to those around me of what I face. I needed to write this all down to get the choice into perspective, I still don’t know what path I’ll take, but I know I’ve faced all sides and not ignored the experiences I’ve had.
Thank you for reading, I’d love to hear your thoughts on his and hope it has also helped others in a similar dilemma!
Keep fighting and stay strong!
Andrea
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