When faced with making the decision of surgery to make my temporary Ileostomy Stoma permanent(*) or going for JPouch(**) surgery I had hundreds of questions... many I managed to satisfy chatting with friends and loved ones, such as, how will I manage my family whilst in recovery from any future surgery? to how long will be off work? when can I drive etc?...
However, there was a long list I presented my surgeon at the time, Dr Clark at Brighton and Sussex University Hospital, many of which he couldn't answer as the outcomes are as individual as the disease for each patient. I kept the list and wanted to share it with you all now, I will also add the answers, where I can, from my experience. In a future blog I will endeavour to share more about the actual surgery and the outcome immediately and up to a year following. I hope this helps others when facing the same life changing dilemma as I know first-hand how traumatic it is!
I will cover this over several blog posts as its fairly extensive and I hope to answer with as much help as I can offer to others.
*Permanent Ileostomy surgery, for me, would entail removal of the remaining rectum, the canal left after sub-total colectomy and temporary ileostomy stoma creation which was stitched to the wall of my abdomen to maintain blood flow to preserve the canal for future surgery options.
**JPouch surgery very basically would involve taking the Ileostomy back inside and dropping it into the bowel cavity area where it can be made into a reservoir (a replacement colon) and connected at the bottom to part of the remaining rectal cuff, thus reconnecting me but without the actual rectum to control output. (I will add a separate blog with the technical stuff)
· Knowing my disease has predominately been rectal/proctitis will that effect the outcome of a JPouch?
My JPouch is fantastic, however from approx. 2 months after surgery I have suffered chronic Cuffitis, my cuff is approx. 1.5cm long and is the area that joins my JPouch to my anus, it is the only source of control for me and when the cuffitis is not managed, I have attacks of urgency and occasional leakage. However, this is not permanent, with medial help, and once resolved, I hope to be finally disease free. I am currently on permanent antibiotics which manage the output which for me has remained acidic. I am using suppositories to manage the Cuffitis (Prednisolone and Salofalk) after 9 months, these have almost resolved the problem.
· If I feel it is not for me because of leakages, pouchitis etc, how long before I can have further surgery to go back to a Ileostomy but a permanent one?
I agreed I would give it a year, however I am now exactly 1-year post surgery and although struggling still, I am still fighting as the good days are amazing, the bad days are all due to my acidic output and Cuffitis. I am now under a top consultant, Professor Hart at St Marks Hospital (London specialist bowel hospital) and undergoing various investigations including Bile Salt Malabsorption to try to sort me out at last!
· How many JPouch’s fail?
Sadly, that one was not answered with exact data which is what we all want to know! However, my specialist nurses advise me it’s a very small percentage. There are so many factors that affect each individual outcome.
· Between stages will output increase from rectum?
My surgeon warned me that if you have 3 stage surgery (Iloestomy, Jpouch creation then takedown) some patients have some output from the rectum, mucus or very rarely some stool but that’s not likely. However, from experience, even with a temporary stoma, you still experience some output of mucus this is because the rectum produces it and until that is removed when a JPouch is made (or its removed if permanent Ileostomy) the mucosa will still be present. I had a weird pressure and feeling of needing a poop about 3 months after my temporary ileostomy, this totally freaked me out as no one warned me!
It happened every week or so until my JPouch was completed. It didn’t hurt at all and after getting over the anger of now having to manage my bag and still poop passed, It didn’t cause and trouble.
I was very lucky and had my JPouch created and connected all in one surgery so for me it made no difference.
· I have struggled with hemorrhoids in the past so will I again and what about butt burn?
You can have internal hemorrhoids in the anal canal. Painful (and painless) lumps are frequently hemorrhoids. painful lumps can also be other things, like abscesses and fistulae. I have not suffered but do struggle with a skin tag from previous problems. As far as butt burn… well when it hits you will know about it! I had it about 3 months after my JPouch surgery, once my diet was re-established, and WOW did I know it! I swapped from using any form of wipes and used Epsom Salt baths and washed after each BM, Metanium baby nappy cream became my best friend. On the occasion it really hit, I was struggling with output and was going about 20/25 times a day, it was that acidic watery output that killed me, my bottom was red raw, burning and bought tears to my eyes. I switched to a plain white food diet of rice, chicken, bread and pasta and after a few days using Metanium and regular Imodium, it passed. Each time I have had an attack since it has been milder and now I can manage. I installed a bidet and use a barrier cream if I feel it’s getting irritated.
· As I still have active disease in the rectum even at 10 months post Ileostomy am I higher risk of Pouchitis?
No, there is no reason you should suffer Pouchitis, it can happen to anyone and there is no higher risk as the infected rectum will be removed when the JPouch is created. Only a very small area of cuff is left to maintain control (between 1-5cm typically). I have 1.5cm of Cuff left and unfortunately, I am suffering chronic Cuffitis. I always suspected as would as I had historically suffered extreme Proctitis*, however, the surgeon did not feel I was at any higher risk than others without Proctitis. *(Proctitis is an inflammation of the lining of the rectum. The rectum is a muscular tube that's connected to the end of your colon.)
I hope this has been useful so far! I will be publishing more Q&A's in Pt 2, please do read on and leave any comments, your feedback is important to me!.