Steven the stoma!

It was back in September 2019 when an unwelcome ‘thing’ came into my life. I had been feeling unwell all day but it was strange and it was not any of the usual symptoms that my mate MS usually bestowed on me. I had the most excruciating pains in my stomach and must admit it reduced me to tears. By 11 o’clock at night my husband called 111 and they decided I needed to call an Ambulance, my husband explained that we lived next door to the hospital and could drive round there but they insisted we phoned because if I went by Ambulance I would go straight into A&E. Being fair the Ambulance came in about 50 minutes, sure enough to their word I went straight into A&E.   
I didn’t have to wait to long before I was seen by a doctor. Before I knew it I was having a CT scan, half an hour later I was back in A&E being seen by a surgeon who explained to me that my colon was twisted and the CT scan showed him that unfortunately they had no choice but to perform an ileostomy. He then went on to say he had been on duty for 7 hours and it would not be safe for him to perform the operation because the op would take 6 hours, so the best bet would be to do it first thing in the morning and he would cancel the operation that was scheduled. I found it all quite hard to take in, my hubby than asked if there was an alternative at which point the surgeon replied “no Mr D the only alternative is your wife will leave here in a box”. I remember my hubby and I just looked at each other flabbergasted, that night my hubby went home and I spent my first of 10 nights in Hospital.
I had a restless night thinking things over and over as I couldn’t quite imagine what this ‘thing’ was going to be like. The nurses prepared me for the operation and my hubby returned at 9 o’clock in the morning I was taken down to theatre, my husband was allowed to come with me, the anaesthetist then said something that completely rocked our world (I’m glad I was just about to be knocked out). He said to my hubby “I am sure you know that we do not like to give people with MS a general anaesthetic, they really do not mix well together we will do everything we can to look after your wife but it is a 6 hour operation, give your wife a kiss goodbye as I’m afraid this is a very high risk operation and the odds are not in your favour, you go home and we will phone you after the operation”. Thank God 10 seconds later I was asleep and 6 hours later I was waking up in Resus, surrounded by 3 nurses one was holding my hand calling my name I opened my eyes and I am not sure who was more surprised that I was still alive and with it! From Resus I went to ITU and there I was nursed on a one to one basis and my hubby was then called in. I spent 4 days in ITU, although I was stood down after 2 and it took them a further 2 days to find me and the ‘thing’ a bed in the Surgical Ward.

I must say that through all of this I was either asleep or being looked after but my poor hubby had to endure the first 24 hours on his own in my eyes he had the tough deal.

Once up on the ward I settled in quite quickly, a stoma nurse came to visit and talked me through what to expect. I wasn’t quite ready for her to say it is time for you to take a look at your stoma, that is when the great unveiling happened.

  

I didn’t like what I saw, she then turned round and said “you need to make friends with it as this is with you for life maybe you should give your stoma a name” that is when Steven was born, my rationale behind Steven was I wanted a name that began with S, I spelt Steven with a ‘V’ because I felt the emphasis could be put on the ‘V’ when pronounced would sound harsher then if I had used ‘PH’! On a side note naming the stoma turned out to be good advice as six months later our daughter was working as a newly qualified nurse and looking after a young lad who had come out of surgery after having an ileostomy and he was horrified when he was shown his stoma, SMD talked to him about naming his stoma and choosing a name that began with ‘S’ like his stoma. The young lad turned round and said to SMD “mine is going to be a girl’s name because my little sister gets on my nerves” so Sally was born!

Apparently it takes a while for the stoma to start working, so for the first three days all Steven had to eat was jelly and ice cream for breakfast and supper and for lunch Steven got to have the ever so exciting Ensure.

 

 

After the three days they gave me soft foods (well if you have ever been in Hospital you will know that is not the greatest). Once my surgeon was comfortable that my stoma was ‘active’ I was allowed home.

That is when my hubby came into his own, let’s call it a stoma emptying regime. Because I do not have the use of my hands he together with my PAs took control with regards to the changing of the bag and emptying.

 

Slowly Steven became my friend when unfortunately for me on 2^nd of February 2020 the same excruciating stomach pains returned and once again I found myself in A&E and after another CT scan I was told I had a blockage. I was soon transferred once again to the ward I was on last September. This time the surgeon was determined to try and unblock the blockage by using a heavy duty laxative she then went on to describe it as being similar to using a heavy duty sink unblocker.

  

I had an NG tube (Nasogastric) which they fed the laxative down but after five days, more painkillers and a CT scan the blockage had not budged so the decision was made to take me back to theatre and performed a Laparotomy and a Adhesiolysis. All went well I came through the op, the surgeon was able to use the same entrance to the site as before so it was a very neat and tidy procedure. This time I was in Hospital for three weeks but before I left a nurse removed the 32 metal staples.
 I had proved to my surgeon I was a strong individual. Although they wanted me to stay for another three days they let me go because the next day the three of us were going to the Theatre!

I was able to have two sessions of physio before the Chilterns MS Centre closed it’s doors because of Covid-19. Then of course on the 23^rd of March the first Lockdown happened, that in itself proved helpful to ‘Steven’ as my body had plenty of rest (but of course while my body was relaxing my brain was racing). Thankfully now in November both my stoma and brain have settled down even though we have now entered a second Lockdown.It’s important to remember that not everybody with MS by any imagination ends up with a stoma. Bowel care is so important, according to the MS Foundation 68% of people with MS suffer with bowel problems, constipation being the highest, one of my very good friends who is wheelchair bound swears by a daily dose of Movicol (or as she calls it Movapoo) and I think that’s where I went wrong. That being said in these crazy times of a Pandemic having a stoma and a suprapubic catheter means I am not using different public toilets when out.