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.
I hope this helps others when facing the same life changing dilemma as I know first-hand how traumatic it is!
*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.)
· 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 and mouth ulcers an indication that I am also suffering Crohns now as I am indeterminate?
My consultant at the time did not feel this was related, I still suffer both now and believe I get water warts and ulcers when I am run down, but anyone can suffer either or both of these without bowel disease.
· What is the location and depth of a loop Ileostomy?
I was told this would be located where the current stoma sat and would not protrude far from the skin, this can cause the stoma to be prone to leakages and may patients need convex bags to manage but its not normally an issue. I never had a loop ileostomy as my surgery was done in a single step, from temporary Ileostomy to functioning JPouch.
· Recovery Estimation after each stage?
When I had my temporary Ileostomy, my recovery lasted approx. 4 months, this was because I was extremely ill at the time it was performed.
My JPouch surgery that created the pouch and connected it removing all stomas, took 31/2 months to recover and return to work, I have had periods of trouble since caused by cuffitis but have managed to remain working with time off for a few days when needed.
· How will the surgery effect my pelvic floor/bladder control and intimacy?
From very early stages of having my Ileostomy created I started doing pelvic floor exercises, similar to those before child birth (Kelgel exercises**), to strengthen the muscles. I kept these up and as soon as I could after my JPouch surgery I started doing them again, just tensing my pelvic muscles, holding them and relaxing, I have found this has helped hugely with all the above concern as well as the control I have now over my bowel and bladder.
Intimacy is a very personal choice, I found I could resume intercourse after about 5 weeks of surgery, however it was not an easy task, especially emotionally as my body had changed yet again and I was petrified about accidents, leakage etc. I discussed all of this with my partner whom was completely understanding and probably as worried about hurting me as I was worried about my issues. I am pleased to say all was fine, nothing bad happened and we both adjusted slowly and learnt to feel totally comfortable with each other again with the new ‘improved’ me.
(**Kegel exercise, also known as pelvic floor exercise, consists of repeatedly contracting and relaxing the muscles that form part of the pelvic floor, now sometimes colloquially referred to as the "Kegel muscles". Wikipedia)
· When can I return to work and exercise?
It took me 14 weeks to return to work after my JPouch surgery, on a phased return basis, I started swimming once the wound from my stoma site had healed at approx 5 weeks. I started walking and doing very light exercise and built it up slowly being careful not to cause any hernia or injuries after about 6 weeks, but I did take a several months for me to feel any energy or strength again, it was a hard time as I was in fact a Zumba Fitness Instructor before all this surgery started 2 years prior!
· What Psychological support/ PTSD support is available to me?
Sadly, the hospital I was dealing with at this time offered no support network and it was suggested my GP refer me. I didn’t feel this would be beneficial as people outside the world of IBD often don’t understand what it is or what’s involved etc. I helped myself by talking to friends and loved ones as well as taking the next step into my own hands!
One of the nurses at the first hospital I was operated on suggested to me that I had the option to choose who and where I go for my next step. I had such a terrible time in the hospital I was at and that was causing much of the stress and anxiety. I researched and found St Marks Foundation, A Bowel specialist hospital in Harrow, Middlesex, UK. They have top surgeons and dealt with my problems on a daily basis. I was lucky enough to persuade my GP to refer me and after waiting 13 months at Brighton Hospital for a referral,
I was seen, consulted and operated on within 3 months of being sent to St Marks! It was the best move I ever made, despite the 2 hours travel. I continue to be managed by them and would not want to go anywhere else! The removal of the first hospital from the equation gave me the strength to deal with my trauma and stress and heal!
Thank you for reading, all the information and details are from my own personal experience and obviously are individual to me. Everyone’s experience is different; however, I hope hearing mine it helps clarify some of the questions you may have, and help you decide what’s best for you!
I have touched on a few things here that I would like to write about in more detail, intimacy, confidence, freedom of choice of hospital and surgeon in the UK, my allergic reaction and PTSD, medications as well as other things that will help others I hope.
Thank you for reading, please do comment, share, ask anything you need and if I can help in anyway, or point you in the right direction if possible I would love to!
Keep smiling and keep fighting!