Stoma stories

In the weeks leading up to my operation I realised I faced the prospect of adjusting to a new body and a slightly different way of living.  Mentally I was prepared to accept this, but in reality you don’t really know how you will feel or how you will adapt until it becomes a reality.   The most obvious changes to my body are my two stomas.  I realise I’ve touched on this subject in previous blogs but I thought it might be interesting, and helpful for some,  if I write about them in a little more detail this time around.

For the uninitiated, and that was me until not so long ago,  stoma is the Greek word for mouth or opening.  In medical terms it is a surgically created opening between the skin and a hollow viscus.  Abdominal stomas are used to divert the flow of faeces or urine outside the body where it can be collected in a stoma bag.  The three abdominal stomas that can be created are a colostomy, ileostomy and urostomy.  In my case I have both an ileostomy and a urostomy.

There are two types of ileostomy, an end ileostomy and a loop ileostomy.  I have an end ileostomy which is where the whole of my colon and rectum have been removed.  The end of my ileum has then been cut and brought to the surface to form my stoma.  A specially designed bag is then put round it where my waste, which would usually pass through my colon, rectum and back passage, passes into instead.   In usual circumstances an ileostomy would be placed on the right side,  but because I have a urostomy,  it’s on my left.

A urostomy is a surgical procedure which diverts the normal flow of urine from the kidneys and ureters to the bladder into a specially created stoma instead.  To make the stoma the surgeon isolates a small piece of the small intestine and from that makes a tube or spout, otherwise known as an ileal conduit.  The two ureters are plumbed into the spout which is then brought to the surface of the bowel and the urine passes through this into the stoma bag.   My bladder has been completely removed and because the flow of urine is continuous, it flows naturally into my stoma bag.  The stoma bag has a tap at the bottom of it so I can empty the urine into the toilet bowl as and when I feel it is necessary.  At night I can hook it up to an overnight bag which saves me getting up and down every few hours.

In a similar way, I have little control on the timing of the release of my output into my ileostomy bag.  The output isn’t as constant as urine but what I eat and drink can affect the consistency of the output.   So for example, I’ve learnt that porridge is a really good start to my day.  It’s slow releasing and tends to take a few hours to go through me.  This means that if I eat breakfast at 8am it could be around midday before I have to empty my bag for the first time of the day.  It also means that my output will be the kind of consistency you aim for.   On the other hand, fizzy drinks and certain vegetables such as tomatoes and asparagus, go right through me.   Although I can indulge in cups of tea,  this too can pass through me too quickly depending on the time and what else I’ve consumed that day.  Other wind inducing foods like broccoli and onions will puff the bag up so I might have to go to the bathroom and gently let some air out it if this happens.

When food or drink passes through me too quickly,  my bag will fill up with a more  liquid type effluent and I’ll need to empty the bag more regularly.  This is not an ideal scenario since the higher the output,  the more prone to dehydration I am.   If I find this is happening then I take an antidiorreal tablet.  I also up my intake on sports energy drinks to reclaim lost electrolytes and make sure I eat and drink separately.

Last week I met up with the dietitian again.  She’s really happy with my progress because I’m gradually putting weight back on and my BMI is in the healthy range. When studying my diet,  she’s asked me to concentrate on increasing my protein intake to hope repair muscle and heal up wounds.  She’s also advised me to stick to low fibre carbohydrates such as white pasta and rice because she says high fibre foods will be a little too much for my gut right now.  I’m concentrating on eating little and often because my body finds it too challenging to consume too many calories at once.  The feeling of fullness I have after eating too much is very uncomfortable.

During the first six weeks a stoma shrinks in size.   This means that the first stoma bags you use have to be sized and cut to fit your stoma on a regular basis.  Anyone who knows me well,  will realise how difficult I found this part.  Practicality  is not my strong point!  Fortunately,  the stoma nurses and nurses helped me out in hospital and once I got home a fantastic friend became an expert in cutting stoma bags for a few weeks!!

Once your stoma has shrunk to its natural size it will stay that size forever.  A copy of the template used to cut the bags can then be sent to the stoma company who provide your stoma bags, and all new bags will be cut and sent according to this template.  I receive a new batch of stoma bags from a particular stoma bag company once a month.  This service is provided for by a free prescription in which the company liases with myself and my GP so the correct prescription is ordered and delivered on time.    I am provided with 30 bags for each of my stomas once a month, along with overnight bags for my urostomy bags.  I’m also provided with sprays and wipes to help remove bags and clean my stomas and skin around them, plus perfumed bin bags to dispose of the used bags discreetly.

Ideally I change my ileostomy bag once a day and urostomy bag every couple of days.  Leaks can of course take place,  so there are some occasions when I’ve had to change bags more frequently,  but encouragingly that’s beginning to become a thing of the past.  Initially, the Marsden stoma care nurses provided me with a particular brand of bags.  However,  in recent months I’ve learnt that there is a wealth of stoma bag brands out there, coming in different sizes and with various features that might work better for your body than others. It’s a whole new world out there!

Over the past few months, with the support of my stoma nurse,  I’ve been trying out new bags for both stomas.   After trying out several types I’m now pretty content with the stoma bag I use for my ileostomy.  It’s the same brand that we used in hospital but slightly smaller.  However it’s only now that I think I’ve settled on the type of urostomy bag that I want to stay with.  This is because I’ve had more issues with this bag leaking.

I have had some comedy leaks.  One in particular taking place as I received a phone call to tell me my prescription of new bags would be late.  As I sighed at the irony of the situation, and finished the call,  I ran into my bathroom to tear my clothes off and change my bags.  Unfortunately my urostomy was going mad so it was a juggling act trying to get the stoma bag on in between my urine spouting everywhere!!   I was also reminded that multi tasking isn’t advisable when changing bags.  Change the bags and then clean up the mess!

Unfortunately most of the urostomy bag leaks have happened during the night.  It’s always a little upsetting when you’ve had a leak because although it doesn’t take long to change your bags and strip your bed,  it’s not very nice waking up and realising you’ve had an accident.   I find myself going round in circles working out why it’s happened  and worrying if and when it’s going to happen again.   So it was encouraging when I recently spoke to one of my stoma nurses.    She reassured me that leaks are unacceptable.  Yes, they may happen but they shouldn’t be a regular occurrence.  She told me we would find the right bag for me.   She’s stayed true to her word and it looks like we’ve found that bag.

When I reflect back on the last few months I realise that in a little under 5 months I’ve achieved so much.  I’ve gone  to 3 concerts,  a day out at Wimbledon and 2 weddings.  And now I’m about to go away for the first time.   Although there have been a few minor mishaps,  my quality of life is really very good and I’m sure it will keep on improving as time goes on.   Its a good place to be.














A Rollercoaster

Over the course of the last few weeks I’ve been adapting to life at home after major surgery,  as well as preparing for the next stage of my particular path.

When you are initially released from hospital a follow up appointment is made for you to return and see your team a couple of weeks later,  to hear the pathology results and generally see how you’re feeling.  Usually this would be an anxious time for a patient but in my case Mr Rasheed had already given me the good news that my operation had been a successs.

Although I saw him briefly, this clinic meeting was with Nik his registrar, who is also one of life’s good people and a really lovely person.  Whilst I still felt pretty weak, I was adapting to life as they expected and there was no reason for concern.  However I told him I was experiencing a little bit of discomfort in my pelvic area and I seemed to be have developed a slight discharge that needed to be investigated.  I think this is a fairly common occurrence after this type of surgery but it needed to be cleared up so I had a blood test on my way out, and an MRI was ordered to take place within the next few days.   An appointment was made for me to see the team in 2 weeks time, where we could discuss the findings and my ongoing care.

A couple of weeks later I was back in clinic seeing Nik again.  He told me that I did indeed have a collection of fluid sitting in my pelvic area.  He reassured me that this could happen sometimes and was probably the result of a “communication issue”.  We had a couple of choices.  Either I could be admitted for a guided CT procedure where the fluid is drained off or we could watch and wait to see if the issue resolved itself.   Our decision would partly be based on what happened next.

As far as I was concerned I was going to be referred onto another surgeon called Mr Khan, also based at the Marsden.  He is the man who will perform my next operation.  This operation will be preventative rather than curative.  The duodenal polyps that I have,  as a result of my FAP diagnosis, need to come out. Whilst not being cancerous yet, there is a strong possibility they will turn malignant.  Sometimes these polyps can be removed during an endoscopy but in my case that’s not possible because they are too big and there’s too many of them.

However Nik threw a curve ball at me.  It turned out that at their Multi disciplinary team meeting (MDT),  it was decided that I would first be referred back to my oncologist at West Midd/Charing Cross Hospitals for more chemotherapy.  Although this can often happen,  it hadn’t really ever seemed to be on the agenda for me.  Whilst understanding the rationale, a kind of belts and braces approach, I was gutted.  To me it just seemed to add yet more time to an already long hiatus from ordinary life.  Rationally I understood it wasn’t a step backwards, emotionally it felt like it was.

If we were to go ahead with more chemotherapy then this fluid needed to be dealt with imminently.  However we agreed that he would review my MRI images with a radiologist.  Nik would write to both Mr Khan and my oncologist and I would no doubt see each of them in the coming weeks.   I realised chemotherapy wasn’t necessarily a forgone conclusion.  My oncologist might not agree.  I had already gone through 10 cycles and I’d learnt through speaking to her and her colleagues that sometimes it was felt that could be quite enough.

Early, the next week I spoke to one of my amazing Cancer nurse specialists (CNS).  I’m lucky to have 4 of them at different hospitals and they are all fantastic.  We discussed my feelings and she encouraged me to contact my oncologist, Dr Ahmad, to see what she thought.  I felt a little anxious about stepping on anyone’s toes, I’ve been told not to worry in future, and my nurse probably sensing that,  instead contacted her for me.  It turned out that my suspicions were right and Dr Ahmad didn’t feel that I needed any more treatment.   However she booked me in to see and discuss the matter with her a couple of weeks later.

In the meantime Nik called to tell me that they were going to hold off on the CT procedure as the fluid was shrinking itself.  I told him that I didn’t think I was going to be given more chemotherapy.  He was happy with this.  You soon learn when you go through a cancer diagnosis that everyone has their different areas of expertise and they don’t necessarily always agree.  However the surgeons obviously understand that oncologist’s know more than them when it comes to treatments and in my experience defer to them if needed.  We agreed we would reconvene in a few weeks time.

A couple of weeks later I was back at the Marsden to meet Mr Khan for the first time.      Although I didn’t meet him for long I get the impression he’s a slightly different kind of character to Mr Rasheed.  He’s certainly not quite as engaging, but I hear he’s an amazing surgeon and I suppose at the end of the day that’s the main thing.  After an initial few minutes with him, where he established a few details he left to be replaced by his registrar Tim and CNS Tatjana.

They both seemed really nice and infact I’d been seen by Tim whilst he was covering Mr Rasheed’s team over both bank holidays, when I was still an inpatient.   In this meeting he went over their plans for me.  Initially I was to have a CT scan where my duodenal polyps would be re staged ( in FAP terms not cancer) and then once everything was confirmed we could move ahead with surgery plans.  He told me they were looking at a date of sometime in August.  When I explained I had a holiday booked, he was very accomodating and reassured me that because my polyps were not malignant they could work around me so we proposed a date towards the end of September instead.

He told me that the operation would most likely be the whipple’s and that Tatjana would go through things in more detail.  My friend and I were then left with my new nurse.  She explained a little more about what the surgery would involve and answered the questions we had that arose from this.  We learned that the Whipple’s is principally used in operable pancreatic cancer.  During the operation the surgeon will remove the head of the pancreas.  He will also remove the lower end of the stomach,  the duodenum, the gall bladder, part of the bile duct and surrounding Lymph nodes.

However, she also told me there is a possibility that I could have a similar operation instead,  which would be the pylorus preserving pancreaticoduodenectomy (PPD).  In this operation none of the stomach is removed.  The stomach valve  (the pylorus) which controls the flow of food into the duodenum, is not removed either.  The tail of the pancreas is joined to the small intestines or stomach.  Regardless of which operation I have,  it’s likely that my digestion will be affected and that I will probably need pancreatic enzyme supplements to help digest my food.  There is also a risk of diabetes.

I had heard that this operation could last up to 10 hours but she reassured me that Mr Khan performs them in 4 to 5 hours which is obviously still a long time but it was a great relief to learn it wasn’t as long as I’d expected it to be.   I asked how long I would likely to be in hospital for and she told me it would be 10 to 14 days with a couple of nights in intensive care again.

This was all obviously quite a lot to take in.  However the way I’ve tried to deal with this whole process is bit by bit.  For instance, I would prefer not to become diabetic,  but if I do then I will deal with it, if and when it happens.  There’s no point worrying about something that I can’t control and certainly not before I even know the date of my operation.  I took her card and she told me they would be in touch with the date of the CT scan.

The next day I  popped in for a catch up appointment with my GP.  Whilst discussing my ongoing care, she mentioned that she thought I looked pretty pale again.  Was I anaemic ? To be honest it was really difficult to answer because I was feeling very fatigued but I had put this down to general tiredness after my operation.  She knew I was seeing my oncologist a couple of days later so she suggested phoning the surgery the next week if I didn’t have a blood test at hospital.  Just to double check.

My oncologist Dr Ahmad is quite a character.  It’s safe to say that once you’ve met her, you won’t forget her.  Think larger than life, posh, engaging, kind, and slightly chaotic and you have an idea!  We’ve always got on well and I’m very fond of her because ultimately she’s very good at her job and she cares.  She’s also nearly always running horrendously late in clinic!  This isn’t always ideal when you are anxiously waiting for an oncology meeting but fortunately this time I already had an idea of what she was going to say.

True to form I got in to see her nearly two hours after the appointment time but any feelings of irritation I might have felt quickly evaporated as she greeted me.  It was very touching because she took the time to ask me about my close friend who had passed away recently, and who she had also met.  We discussed my surgery and how I felt and then she told me that she did not see that there was any point in me having any more chemotherapy because I had had so many sessions up front.  “The Marsden always recommend this” she told me “but there’s no evidence to show that it works”

We  went on to discuss the staging of my tumour when it was removed,  as well as my original diagnosis which seemed to back up her decision.  However,  she wanted to review my scans in more detail so we arranged to meet again in early August.  She seemed pretty certain there would be no treatment so I was very happy.  At the end of our meeting, I mentioned my GP’s observation to her and she agreed that I looked very pale and so I had a blood test on my way out.

At the beginning of the next week I had my CT scan back at the Marsden and the next day I received a phone call from Dr Ahmad.  It turned out my GP’s suspicions were correct.  I was very anaemic. My HB levels were at 7.9.  The average woman should be around 11.5 and I was diagnosed at 8.1 so I was really quite low again.  She reassured me that this can happen after big operations but as a result I needed a blood transfusion.   Unfortunately she couldn’t get me in to have it done at my nearest hospital, West Midd  but I was booked in for that weekend at Charing Cross instead.

I had my blood transfusion on the following Saturday and it was fine.  I feel a bit of a pro now as it was my 3rd one,  albeit if I don’t remember the last one because I had it when I was unconscious after my operation.   The worst part is the boredom. I had 2 units given to me and it took most of the day.  However a fellow patient friend popped over to say hello after her scan and another friend kindly joined me for the last few hours so it wasn’t too bad.

On the Tuesday I was back at the Marsden, thank god for free transport,  for my follow up appointment with Mr Khan regarding my CT scan.  This time it lasted only a matter of minutes and was with Tim again.  He told me that the staging of my polyps was as they expected, my bowel looked fine,  but that an adenoma, which is a type of a benign polyp,  that I have in my liver,  had grown by 1cm since it was last scanned earlier in the year.   He told me that whilst they weren’t particularly concerned about this, they might decide to now take the adenoma out in my operation too.  They were going to have to discuss this at their next MDT and to help establish what to do, they needed me to have another scan. This time an MRI on my liver.  “Now go” he told me, “you spend far too much time at hospital as it is!”

I had my MRI on the Monday of the following week but I’m yet to discover if they have decided to remove the adenoma as well.  Tatjana was away on holiday for a couple of weeks after my scan and although she’s back now and chasing up the team’s decision for me, she’s really busy.  Hopefully I’ll hear soon, but at least I know there’s nothing really to worry about.  She’s reassured me that the scan showed that the adenoma is benign and I’m sure I’ll find out when I meet the team again.

Later that week I had an appointment at Chelsea and Westminster Hospital.  This time about my thyroid.  Right back at the beginning, when I was originally diagnosed,  Dr Ahmad asked if I wanted to become part of a trial.  Basically, the trial involved me having a whole body MRI scan up at UCL hospital.  Following that,  for the next year I would be sent questionnaires every 4 months to complete and send back.  Whilst not officially being on my file,  she suggested that it might be a good idea because it would give us even more information on my body.  Initially I was pretty reticent.  I’d hated my first ever MRI because I had felt so claustrophobic.  However both she and my friend persuaded me it that it would be worth it.

As a result of having this scan, a nodule on my thyroid had shown up.  Unbeknown to me, cancer of the thyroid can also affect people with the FAP gene.  So once the scan results came through in late April of 2016,  Dr Ahmad sent me for an FNA, otherwise known as a fine needle assesment, and ultrasound.  These results came back around the same time that I was due to see her again in a follow up clinic following the end of my chemo radiotherapy trearment.  When I initially saw her, the doctor who had completed the pathology report told her he thought it indicated secondary bowel cancer.

This was obviously quite a shock, especially since there was no change on the scans of either my liver or lungs,  which are the more usual places for bowel cancer to spread to.   She asked me if I would be willing to have a second biopsy and referred me on to see a specialist at Chelsea and Westminster hospital.  I had the second biopsy at West Midd in June of last year and met my new specialist for the first time a few weeks later.   Just before I met him the second biopsy results came back.  Now they said it was primary thyroid cancer.

I met Mr Smellie, yes I know, brilliant name!, in late June of last year.  He’s another character.   He reassured me that if anything this was primary cancer, so  not great, but in the great scheme of things,  better than having it spread from the site of origin.  However, there was still great debate over the pathology results and they had been sent on to another hospital for closer reviews.  He told me that the best thing would be to eventually remove the whole thyroid but that my bowel tumour was the primary concern.  If the thyroid did turn out to be cancer,  he told me, it would grow very slowly.

Eventually late that summer,  the nodule was confirmed to be a non cancerous nodule that would probably still have to come out.  But we postponed any follow further up appointments until after my bowel operation.  So when I returned to the hospital a few weeks ago, it was my first visit for nearly a year.

Initially, this time around, I did not see Mr Smellie.  However, my case is so complicated that eventually he had to join the poor junior doctor and I for the meeting anyway.   “So you’ve had your operation?!” he exclaimed “well this changes my decision because last time I spoke to them”, “them” being the West Midd surgeons, “they didn’t think they were going to be able to get your tumour out!”  Even though I’ve always been aware of his opinion, his bluntness still took my breath away  Mind you in some ways his honesty is also quite refreshing.

To cut a long story short I’m pretty sure he has now decided that I should carry on with the whipple’s operation and that he will perform the thyroidectomy afterwards,  probably in February of next year.  “How long do you think I’ll be in hospital for ?” I asked as he rushed back to see his patient, ” A week” he answered ” it’ll be like a walk in the park after what you’ve been through!” he smiled as he left the room.

My week of hospital appointments wasn’t quite over just yet.  At the end of the week I was back seeing Nik at the Marsden again.    It’s always good to see a friendly face and after we had caught up on my news,  It turns out that he knows Mr Smellie, we discussed what we would do next.  We agreed that he should organise a follow up MRI on my pelvis to make sure it was healing, and that I should also have a follow up blood test before I saw him back in clinic again a couple of weeks later.

I suppose this blog gives a little bit of an insight into what’s been going on for me over the past few months.  The other day I worked out that I’d had 14 hospital appointments since my operation.   Later this week,  I have both my MRI scan and follow up clinic.  Next week I’m due to see Dr Ahmad,  the dietitian  and my stoma nurse.   The week after that I’m back to see Mr Smellie again.   However after that I’m checking out for a couple of weeks.  Sometimes I feel like I’m on a bit of a rollercoaster.  Never quite knowing what’s around the corner.  So I think it will be do  me the world of good to get away.  Switch off from it all for a while.  Energised and ready for whatever comes my way next.