Terry's Story - Part 3

After my urostomy surgery (see Terry (2) ). I had hoped that everything would be find and I'd need no further surgery. Some people are lucky and things go well and some people are... like me! I developed two problems with my new ileal conduit. One problem was that, for no apparent reason, it developed a tear near the skin of my abdomen which wouldn't heal and the stoma itself prolapsed. For those not familiar with the concept, basically my nice new stoma of about 2.5 to 3 cm in length (a suitably sized spout to go into my pouch and to help to prevent leakage and soreness) grew to about 6 or 7 cm. A visit to my consultant produced the expected outcome - "I'll book you in for your stoma to be revised. It'll be a few months." (Well, this is the NHS - what do you expect?)

The surgery is, hopefully, straightforward. The stoma is cut where it joins the abdomen, 'uncuffed' (it is pulled back on itself like a pullover cuff, or a roll neck sweater) and straightened out. A suitable length is cut off and the raw end pulled back over itself and stitched down to the cut edge of the abdomen. The stitches used are soluble and the stoma will be swollen for a while due to its having been pulled about.

One of my concerns prior to surgery is that I may have to have 'awake fibre optic intubation'. Basically this means that the anaesthetist will spray lignocaine local anaesthetic into my nose and throat and then use an endoscope to go put my nose, down the back of my throat and through my vocal chords. The armoured endotracheal tube will be threaded over the fibre optic scope and then inflated in my larynx. After this, I can be put to sleep for the operation.

A further problem which I've had is with my district nurses. In Terry (2), I explained about the problems with mucus build-up in my rectal stump, together with bleeding. The district nurses came weekly to administer washouts using 100 ml of warm saline, but I was getting pain caused by the mucus build-up within a few days. My consultant requested that the nurses come twice weekly but they didn't want to do that!

One of the district nurse co-ordinators discussed with my GP whether, as I am not housebound, I could have the washouts done at the surgery. Then, in breech of protocol, he told me that he had done this and that I was to attend a case conference at the health centre where my GP is based. I attended with my stoma nurse (she's absolutely great - I can always rely on her help and support) and my wife. The district nurse co-ordinator brought the senior of the team of nurses caring for me and the Locality Manager, the overall manager of the nurses.

After discussion with the Practice Nurse who said that the health centre was not suitable for such a procedure and that the best place for this to be done was my home, the Locality Manager summed that up by saying that it was agreed by all that the best place for me to have these washouts was at home, but the district nurses weren't going to do it! When asked who would, he replied that he didn't know and it wasn't his problem as the district nurses were there to care for the housebound only and I therefore didn't qualify! This isn't true as the district nurses are primarily for the care of those who can't get out, but not exclusively. In fact, they are there to provide care in the home where the home has been agreed to be the most appropriate place for the patient to be treated.

I am now getting treated twice weekly and am much better for it. It is a pity that I had to ask my local MP (who also is great) in order to get the care which should have been provided anyway.

Shaz makes mention of mucus build-up in rectal stumps on one of her web pages. This can, for some people, be a real problem. I've always had problems with mucus and bleeding from there and, with the removal of most of my colon, the mucus built up rapidly, hardened (the rectum also removes water from the mucus as well as releasing it as mucus in the first place) and the hardened lump of mucus caused bleeding and inflammation of my rectum - called distal proctitis. The current method of clearing it works well as it gets washed out whilst it is still fairly liquid and I'm not getting the bleeding at the moment. I'm sure that, if the nurses stopped, I'd quickly run into problems again.

I'm hoping to be operated on before the end of August 2002, but I've already been in contact with the hospital's infection control nurse. With my previous MRSA history, it has been agreed that I should be fully screened, and treated if necessary, prior to admission, to avoid problems for me and other patients in the hospital. It should mean that I can be nursed in an open ward, rather than barrier nursed in a side room.

Unfortunately, the screens came back positive for MRSA. MRSA was found in my nose (again, again!) which is easy to treat with five days' application of Bactroban ointment, but also in the tear in my ileal conduit. Ointment can't get into the places where MRSA might be lurking so my consultant had to consider options. Fortunately, the particular strain of MRSA in my ileal tear was sensitive to oral antibiotics. I should also add that I'm allergic to penicillins and cephalosporins which rather limits the choice of antibiotics which I can be given. In this case, the MRSA was sensitive to rifampicin (an antibiotic used mainly for tuberculosis and leprosy!) and doxycycline. After five days of treatment with Bactoban ointment for my nose, Aquasept whole body wash 'just in case' and the oral antibiotics, my district nurses screened me again. To my great delight, the swabs came back negative, so surgery was possible. To prevent the emergence of the MRSA again, possibly this time resistant to oral antibiotics, it is necessary for surgery to take place within two weeks of the screen results being clear (three week window from the actual test date).

I was admitted on Sunday 28 July and taken to theatre in the afternoon of Monday 29 July. In the anaesthetic room, I had two consultants, Dr John Curran, Mr Bishop's current anaesthetist, and Dr Fitz Henry, the delightful consultant who'd had such 'fun' with me at Christmas. She had dropped in to say 'hello' and also to ask if I minded her junior watching. Dr Curran had a junior as well and, of course, I said that I didn't mind. Dr Curran inserted a cannula but then, after discussing with me, decided that 'gassing' me with sevoflurane would be the quickest way of dealing with me. It saved drawing up lignocaine and propofol to inject to induce anaesthesia. Sevoflurane has a pleasant 'apple' smell and is very quick acting. I'd been 'gassed' the previous year with my burst suprapubic catheter balloon and for my right knee arthroscopy. These days, with modern anaesthetics and being allowed to hold the mask oneself, a few good deep breaths and the next thing you know, you're waking up in recovery - which is exactly what happened. A cautious inspection showed a much shorter stoma and no laparotomy. Mr Bishop, my consultant was hoping that the surgery could be done from the surface without opening my abdomen up for the fifth time (emergency laparotomy for peritonitis & Hartmann's procedure [temporary colostomy], reversal of Hartmann's procedure [removal of temporary colostomy], emergency laparotomy, sub-total colectomy and formation of ileostomy for gangrenous colon, and partial pelvic clearance [removal of bladder and prostate] with formation of ileal conduit). To my delight, I didn't have an 'NHS zip' [the row of clips in an abdominal wound looks just like the teeth of a zip, don't you think?], so convalescence should be fairly rapid.

A joy in recovery was finding my recovery nurse was Yasmine who had nursed me in Lister Ward about two years previously. It's great having a face you know and a person you can relate to in recovery - modern anaesthetics mean a very rapid return to consciousness.

I was in my bed in recovery and was soon taken back to the ward. I had a pethidine PCA for pain control overnight along with a bag of saline and another of glucose to re-hydrate me, but, by the middle of the night when the buzzer went to show that the syringe was nearly empty, I decided that I didn't need any more.

The next day I was up and out of bed having a shower. The cannula had been removed as it had come almost out during the night. Nurses may only remove cannulas with the doctor's permission unless, as in my case, they obviously wouldn't work. The idea of trying to keep one in and working during recovery is to have venous access in an emergency should the need arise.

When the medical team did its round, I learned that I had yet another anastasmosis! [I had two formed for the ileal conduit: one is normal, but my second was caused by the need to cut away a piece of ileum so stuck with adhesions that it couldn't be freed up safely other than by removing it.] Instead of cutting the stoma where it joins the abdominal skin, the tear had been opened to raw edges and stitched, but the stoma had been cut higher up the ileum, a length of ileum removed and then re-stitched back to the ileum
attached to my abdomen. This should heal quicker.

The stoma swelled up due to the bruising caused by handling it: this is normal and expected. A new flange with a larger hole was applied and I shall need to check the flange at least weekly as it shrinks when the district nurses come to care for me.

Home on the Wednesday morning (always much better than hospital, isn't it?) To find my wife, bless her, had repainted the bathroom as a surprise for my return home! The revised stoma is still swollen, but is of a much better length. I've still got a good spout so that it will drain into the pouch rather than over the face plate. (I've noticed a tendency in America for surgeons to leave the stoma proud of the skin by less than half a centimetre so convex flanges are almost the norm - a two to three centimetre spout is much easier to deal with.)

So hopefully (and where I have I heard that before?) I shouldn't need further surgery for a long time. My stoma nurse is arranging a support belt to stop me damaging myself when I lift before I think. I know I've got a 50 lb weight limit, but habit often finds you lifting something you've always lifted before without thinking! I'm liable to incisional hernias due to the number of times I've had my 'NHS zip' so the support belt should help there. Unfortunately my abdominal muscles are weak because of the surgery and attempts to build them up could cause the very hernias I'd wish to avoid, so careful is the watchword!

Terry

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