My Journey to Becoming an Ostomate

During early 2007, I started experiencing extreme pains in my lower left stomach. Upon attending A & E, I was admitted to the hospital for pain control (IV Morphine) and IV antibiotics. The diagnosis was that I was suffering from Diverticulitis; this was confirmed by a scan and endoscope.

For the next two years, I would end up in the hospital at least once every two to three months with another severe attack. When I questioned how to deal with this, I was told that it needed to be surgically resolved; however, because of my underlying conditions (diabetes/angina), the risk of surgery was deemed too high. This was the view of at least three consultants I spoke to.

Following a consultation with my GP, it was decided to refer me to one of the surgical teams at another hospital for a second opinion on my condition. I ended up under the care of another GI consultant and after some initial investigations, I was told that it might be possible to carry out the procedure, removal of the Sigmoid Colon, via laparoscopic surgery, thus greatly reducing the risk of surgery. This course of action was agreed upon and in mid-2008, I was put onto his elective surgery list.

The sporadic attacks and short stays in the hospital continued, although each attack was getting slightly worse than the last. In January of 2009, I was admitted to my local hospital suffering a really bad attack; in fact, the surgical team was very close to performing an emergency operation, but at the last minute decided to increase the antibiotics and to put me on a liquid diet for a week. This worked and the inflammation reduced; however, they said that they would write to my GI consultant, explaining how advanced the condition had become.

During the following February, I received an admission date for early March to have the procedure carried out. On the 3rd of March, I was booked into a ward, ready for the surgery the next day. On the morning of the operation, I was told that the consultant anesthetist had decided that the risk of me having an angina attack during the operation was too high because of my stomach having to be inflated and the resultant pressure on my aorta. Because of this, they were going to proceed with open surgery but using a side-to-side incision rather than a vertical one. By this time, it was a bit too late for me to back out of it!

After the surgery, I woke up in recovery, but for reasons I do not understand or have been told, I was kept in recovery for some 6 hours. When I returned to the ward, I only lasted a couple of hours before being whisked off to Intensive Care because my lungs were failing. I spent the next 24 hours on CPAP before being taken back to the surgical ward one evening.

The next morning when I woke up, two nurses decided I needed to sit up and get out of bed. As they sat me up, I felt something ‘go' below, even though part of my pain control was an epidural. This feeling was quickly followed by what seemed like the loss of several gallons of clear fluid and blood flooding out of my stomach. I was whisked around to the Dressings room where they removed me from the sodden bed onto a trolley and the doctors were summoned. It appears that my incision had decided to rot. When they removed the dressings, the smell was awful and despite the epidural, it hurt like hell.

For the next couple of days, they replaced the dressings daily and took lots of blood samples. On the third day, I started to feel distinctly unwell and indeed do not remember too much after midday. It appears that the anastomosis had decided to break down. Subsequently, I was told by my consultant that it took him three attempts to get it to hold in the first place. Anyway, apparently by midnight I was scanned and by 3 am was back in the theatre. After the operation, I was sent directly to Intensive Care and kept on life support for about 12 hours. I woke up to find I now had a colostomy.

Of course, the newly stapled incision rotted as well. At one stage, the hole was some 10 cm wide, a strange feeling when you can look down and see your own guts! They started to use vacuum dressings on the wound and I remained catheterized. Pain control during this time was very hit and miss; the epidural only seemed to work on my right side and after a week, this was removed and I was dosed up with a variety of painkillers, pills, and patches. Next, I caught MRSA and spent the rest of my time in a side room being barrier nursed. It was 3 months before I saw the outside of that hospital and a further 2 months before I could end having vacuum dressing on the wound. During this time, I also developed a pelvic abscess. Somehow the abscess found a way to connect itself to my remaining 9 cm of rectal stump and drain through there, so I left the hospital with a portable vacuum pump, urine drain, and a rectal drain as well as my shiny new stoma!

Since my discharge from the hospital, I have been admitted to my local hospital a couple of times, this being because the abscess was causing pressure on my bladder and creating problems there. It was found that the function of my right kidney has been reduced because of this. I have also been admitted back to my GI consultant's hospital on three occasions to have the abscess drained out under GA. I still have to flush out my rectal stump every day to remove the discharge from the abscess. I believe the majority of the pain I suffer comes from a combination of the abscess itself and from where the wound has healed but sections of my intestine seem to be attached to it. I also have a couple of hernias around the colostomy that hurt in their own special way.

I am currently waiting for a date to be set for the next round of surgery. I have seen the Plastic Surgeons and they have decided that a muscle in my upper leg can be used to fill the resulting cavity when they remove the abscess, rectal stump, and anus. This surgery will occur sometime later this year if I can overcome a couple of barriers.

It is now 3 years since my surgery, my abscess continues to need draining daily and I am stuck on a raft of medication including Oxycodone (140 mg a day), Tramadol (400 mg a day), Oxynorm liquid top-ups as required, and the latest thing added to the mix is Sativex (google it, you will be surprised!).

Philip Martin.

Wow... Philip, so sorry to hear that you're still in the battle of your life. This site is full of heroes and survivors who understand what you're continuing to go through. I have been extremely fortunate to never have experienced the abscesses or hernias you speak of, but my heart goes out to you and all the others that do. I hope that your next surgery will be the answer to your problem and the last surgery for a long, long time. You deserve to live without constant pain, my friend. Pain medications are necessary, but shouldn't have the power to control your life. I wish you nothing but the very best. Keep us informed and know that we care, BEG

Hey Phil, I and many others feel for you, but the last thing any of us want is sympathy; we're all too good for that, which is why this site exists. Here you get support and on occasions, valuable tips to help live as well as is humanly possible, with or without our life-saving stomas. When you have the final chop of the stump, etc., it solves many problems and somehow it gives a finality and acceptance of the condition. It takes a while to get the pain control sorted and slowly a more productive and positive life seems possible. I wish you a happier and healthier 2012 and my sincere best wishes to your family, who are going through it with you. Kind regards, Marilyn

Well, Phil, I read your not-yet-ended saga. By comparison, my sugery years ago was a walk in the park. Good luck in 2012!

Phil, there should be a Wall of Fame for the many heroes here on this site. We are stronger than any of us ever thought. That's the strength that is going to pull you through this tough stretch. Welcome to this community. Take care.

Living with Your Ostomy | Hollister