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).
· Considering my output before surgery was liquid with extreme urgency, will I have full control with a JPouch?
In short yes! Initially I found with the JPouch, I felt the need to run to the loo, this lasted literally a few days, then I would get pressure and take myself off to the loo without too much panic. After about a month I gained confidence and as the area healed from surgery, I started training my new Pouch to hold, when I had the urge (which literally felt like a bit of pressure in my anus) I would wait 5, then 10, then 15 mins and it has now, a year on, progressed to at least an hour when I am healthy (with Cuffitis I can still hold it but in extreme flare ups I have had 2 accidents where I didn’t make it in time, that’s the only accidents I have had). Taking into account I had my JPouch created and connected in one single operation, and via my anus, it meant I was pooping through where I was healing, although this may have made it more tender, it didn’t effect the control. I feel I have more control now than ever before, even if my output is liquid, which it often can be. I have had no leakages or accidents when well. Obviously, this isn’t always the case and others may not be as lucky, this is just my experience.
· How long after connection of my JPouch, can I use Imodium (Loperimede/Norimide) and how long will I be on a liquid or restricted diet?
I followed the advice I was given which was, to have a *low residue diet for approx 4 weeks, then start reintroducing foods slowly, see how I react to each before progressing to the next. I think it was about 8 wks before I was back on a varied diet, however, I didn’t reintroduce vegetables, salad, nuts etc for at least 12 weeks. Alcohol and any juice were at about 15 weeks but that was more due to the fact I was on medication that would react until then. It was at approx. 14 weeks my specialist nurse suggested I try Imodium to thicken up and slow down my output, I started on 1-2 once or twice a day and have progressed now to 3 half an hour before each meal and 3 at night, this is because I am now on a full varied diet without avoiding any foods or drinks except Cheese (as it causes me to have extreme bloating, cramps and discomfort), and my output remains typically liquid and acidic.
*The low residue diet I used consisted mainly of white foods such as; chicken, white bread, white rice and pasta, egg, dairy and potatoes. I drank mainly herbal teas and water.
· Will the surgeon be able to free up the tight stitching left from removing my colon that is causing an overhang in my abdomen area?
Little did I know that the stitching was actually where they had secured my remaining rectum when they carried out the temporary Ileostomy and colon removal, this made sure it maintained blood supply so the JPouch could be connected at a later stage to my anus, and the rectum would then be removed, thus freeing up the stitching.
· What pain relief is available during and after surgery as I had a severe allergic reaction to Morphine (which is not untypical of me as I suffer MCAS which means I react to things more than most) during my first surgery, one that left me with extreme post traumatic stress and panic attacks about future operations.
I was given a patient-controlled Oxycodone drip must the same way as the morphine was given, but I was also given a dose of antihistamine to back me up against an immediate reaction. I was fine on this and remained on this whilst I was in hospital, shortly before I went home was moved to Oxynorm and Oxycontin tablets which I used for the first 6 weeks and then slowly withdrew them. I was also given Gabapentin for spasms and pain relief, I was on this for 4 months as I had nerve pain around the site where my Ileostomy was removed. This managed it very well. These were both backed up with Paracetamol and Codine Phosphate as needed. I occasionally use Codine Phosphate now to help with output consistency if I feel the loperamide is not being as effective when I am suffering Cuffitis and more recently, Pouchitis.
· Are recent lumps on my skin