Patient Information - Intestinal Failure Unit

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Association established to help people or carers who are living with an illness which requires treatment by intravenous, enteral or artificial nutrition therapy

Addition:

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In January 2018 I was rushed into theatre at my local hospital for what became lifesaving surgery. I had been struggling with abdominal and back pain for a while but it was put down to me being in the third trimester of my pregnancy at the time. The emergency surgery resulted in me having the majority of my small bowel removed due to a band adhesion; leaving me with an ileostomy and only able to feed with Parenteral Nutrition (PN) via a central venous catheter seven nights a week. Waking up to this news in intensive care two days later, I was in complete shock!

I had been somewhat of a ‘health freak’ all my life and looked after my body so this was completely devastating for me. Nothing prepared me for the next news I was about to receive though... because of the severity of what had happened to me our baby girl Isabella had passed away in theatre during my surgery. She had been delivered via Caesarean section whilst I was still on the life support machine and the sheer realisation of all of this horrific news left me completely broken.

Meeting my beautiful little girl was one of the most proudest but traumatic times in my life. She was absolutely perfect and looked just like her big brother. Her Daddy and I spent some very precious moments cuddling and loving her before we had to say goodbye.

I then spent a further four weeks in my local hospital and was told by my consultant surgeon that I was being referred to Hope hospital in Salford who are a centre of excellence for dealing with the circumstances in which I was facing. I was told that once I got to Salford they would discuss with me the options of a possible stoma reversal but there was a chance that this wouldn’t be possible with me only having 15cm of small bowel remaining.

Once I arrived at Salford Royal I was taken to the Intestinal Failure Unit (IFU), ward H8 and it was then that I truly began to believe there was some ‘hope’ for me. Each member of staff was incredible from the minute I arrived. I met my consultant who was sympathetic but extremely professional and talked me through each stage of my recovery and the stoma reversal surgery. I then met the rest of the team who explained each part of the situation I was in and carried out all of the relevant tests that were required.

H8 is a ward like no other I have ever experienced. You are taught to measure your own input and output and it has kitchen and laundry facilities which is amazing for patients who are on the ward for a long duration of time, as it allows them to feel more independent and not feel as ‘hospitalised’. There was always a member of staff on hand to answer any worries or questions you may have or to assist in anyway. Also, in the morning when the doctors did the ward round they answered anything that the nurses couldn’t, with the added idea of having a pad to jot down any questions which was great as we all know how a group of doctors around your bed can make you forget to ask the things you really want! I was on the ward for three weeks and was then sent home established on Home parenteral Nutrition (HPN) six nights a week to wait for my reversal surgery in a few months’ time.

Fast forward to June 2018 and I was in theatre having my operation which literally transformed my life again, for the better this time. Again, alongside my consultant I also had another fantastic colorectal surgeon and a team of theatre staff such as; an anaesthetist and nursing staff who helped me get down to theatre that day with as little anxiety as possible. I awoke from my surgery expecting to have a gastrostomy tube and with the fear of receiving more bad news. Neither of these were true and it was the first bit of positive news that I had received all year. The surgery had gone well and there had been more bowel found than expected which changed the plan of being on TPN for the rest of my life to the chance of coming off it in the future. I still have a fair way to go in my recovery but I’m getting there bit by bit, again with the help and support of both my consultants and all of the nursing team on H8. I can’t thank my two consultants enough for all they have done for me so far, alongside all of the rest of the staff including doctors, professors and nurses. They really are my hero’s in all of this and without them I wouldn’t be able to start piecing my life back together and be here for my little boy, who also adores all of the staff on the ward as they always make a fuss of him! In fact, he is even saying he is going to become a surgeon alongside my PN consultant... his inspiration! 

I urge anyone who is beginning this difficult journey to try not to fear going onto the IF ward H8... You really are in the best hands with incredible staff that will do their upmost to support you in any way possible.

I came to this unit on 12 December 2017 after spending 10 weeks in a general surgical ward at North Manchester General Hospital. I was transferred to Salford Royal onto H8 and immediately I noticed key differences in my treatment:

• The staff treated me like and adult and encouraged me to look after myself as much as possible.
• All treatment and decisions around my care are discussed with me by extremely helpful doctors and staff. They always answer any questions that I have without rushing, so there is no need to feel under time pressure.
• As soon as I settled in I was shown how to take my own input and output measurements and record them in my file.
• If I needed help or reminding of how to do anything, any member of staff willingly helped me.
• After a few days I was trusted to self-medicate. I felt this was a great confidence booster.

I believe that the key to getting better is to set goals that are achievable with effort and time. Work with doctors and staff, they have the experience to give sound advice. 

Do not be afraid to ask questions, make notes on important points so you can refer back to them. 

Take full advantage of your time in this first class unit. It is the stepping stone to getting better and going home. 

I was initially diagnosed with Crohn’s disease at 15 years old. At first the symptoms were not too bad, I had regular flare ups which would usually get resolved with steroid treatment. However, when I turned 18 I became much more ill.

Prior to turning 18 I had never been to Salford Royal before as I am not from the area, but my local hospital had done all they could and referred me. I got my bed at 7pm on H8. I woke at 8am the following morning to a nurse drawing on my stomach. The nurse was applying pressure to my abdominal area which was very painful. The fact I had only been just been admitted made me assume that this would have been serious. When I woke up I was told that the Crohn’s had created a hole in my intestines which was trapping food and the food had begun to rot. The nurse told me that usually half a litre of abscess fluid is enough to rot lungs and brains but I had 4 litres! It really is a wonder I survived that. Following the second procedure I woke up with a colostomy bag, 60 cm of my bowel gone and a jejunostomy tube.

My recovery took time, I was so thin and weak, by my following birthday I was six foot and six stone, even walking was a challenge. I was put onto TPN as well as a jejunostomy bag. I had 20 cm of bowel left and this would not absorb anything. I had been in the hospital for 10 months and I was frustrated. This is supposed to be the time I was leaving home and spreading my wings, not stuck in the hospital.

Eventually I did get better, I remained under weight but I managed to live a normal life. I managed a holiday to Egypt which even though I had to take a total of 28 litre of TPN feed on the plane which was awkward but I don’t regret the trip at all. I was not letting this hold me back. Everything levelled out and I was living a normal life, until four years ago. One morning I woke to find half my face paralysed which quickly became my whole body and I was diagnosed with Guillain-Barré. I urgently required IVIG treatment in order to fight this infection which began to damage my liver which had already been weakened by years of TPN.

Now following my recovery, I find myself back on the IFU ward, however, this time it is good news, I have had my bag reversed and I am off TPN. Already I have put a bit of weight back on and I am starting to get my life back. The adjustment is strange; I still reach for my carrier bag every time I stand up! Last week I ordered a Chinese takeaway to the ward, I felt bad eating in front of everybody but I was so happy that for the first time in years I could actually eat it! It seems wrong eating and drinking what I want, I thought I would be on TPN for the rest of my life.

Without doubt Salford Royal have made this possible for me, initially they saved my life, now they have given me my life back, I feel like I’m 18 again! The facilities on IFU are great, I can leave the ward when I want, and there is never anyone I don’t believe I cannot talk too. Some of the nurses have known me since I was 18 and have seen me at my worst, its them that kept me going when I wanted to give up. Now I am looking forward to be home for Christmas and starting my new life in the year.

Upon my initial diagnosis of Crohn’s disease I was assured that I should be free from surgery for a number of years; however nine months later I found myself in the hospital undergoing my first operation.

This operation was to remove part of my bowel and fit a temporary stoma bag, thankfully the operation was a success and for the next 14 years I managed to live a normal life with my husband and my young son.

For the years following my first operation I had been managing with Crohn’s until last February when increasing pain resulted in me going for an MRI scan. The results of the scan confirmed that there was a fistula growing, the results of the surgery to remove the fistula initially looked reassuring. The relief of waking from surgery to find no bags attached was great, however seven days later a toxic leak saw me being taking back down for urgent surgery, the operation saved my life however I woke this time to find two bags fitted.

Over the next 21 weeks my recovery was slow, I had lost four stone, I had not been discharged and another fistula was beginning to grow. As you can imagine I was beginning to feel really low and upset.

This upset was heightened when my local NHS trust informed me that there was no more they could do and I was being transferred to Salford Royal.

I was transferred to Salford Royal in November 2015, upon admission I was informed that I could be here for three months, with my son and husband 30 miles away in Preston and Christmas was around the corner, I could not have been more upset to hear this.

By the time I got to Salford Royal, I was malnourished, heartbroken and could not see light at the end of the tunnel. I can confidently say that this was the hardest time I have ever had in my life and I cried every day for two weeks.

As the days passed I came to know the staff on the ward and conversations with the other patients reassured me that I was not alone, the other patients were in the same situation as me and worse.

Seeing a light at the end of the tunnel was key to helping me feel better and the staff at Salford Royal understood this and were great.

Weekly family meetings allowed me and my husband to know exactly where I was up to with my treatment, daily ward visits from the doctor allowed me to check up on my progress and ask any questions that I had.

The whiteboard in my room outlined the scans I had coming up, crossing them off after they were complete made me feel like the end was in sight and I was closer and closer to going home.

Open visiting hours makes such a difference to me, with my son in school all week, knowing I could see him every weekend made me feel better and the flexibility meant that friends and family would come and visit me during the week.

During my first visit to Salford Royal I constantly felt that I was up to date with my progress, I knew what I was aiming for.

Facilities such as our own kitchen and laundry room mean that the ward feels a bit more personal, it is a shame that other hospitals do not have the same funding because it makes all the difference.

When I first arrived I feared I would not be home for Christmas but Salford Royal got me out of malnutrition and kept on top of my TPN, through more in depth testing than I experienced at my local trust.

Every day I felt stronger and stronger and thankfully I was not in for three months, I was in for six weeks which meant I was discharged in time for Christmas.

I am back seven months later with an infection and I have been here for 14 days.

Regular blood culture tests are currently being carried out to see if the infection has gone and hopefully I will be going home this week. Again, I am kept up to date with where my recovery is up to. The ability to pop to the café or Marks and Spencer makes all the difference and I did not have the same dread that I had last time, I know I will be looked after here.

The reason I want to tell my story is because I want to inform other patients, who are not from the area, who get admitted to Salford Royal, that this place can feel like a home from home, you will be looked after and if I had read a patient story like this when I first was admitted I would not of been half as anxious as I was and hopefully after reading this, you will not be either.

I was initially diagnosed with Crohn’s Disease on New Year’s Eve in 2009 at my local hospital. I had suffered from tummy trouble for some time and had undergone lots and lots of tests prior to my diagnosis.

On the 19th May 2010, I was rushed into my local hospitals A&E department with a perforated bowel. I was extremely unwell and was admitted to the Intensive Care Unit where I stayed for 4 or 5 days in a coma. I was eventually stepped down to the High Dependency Unit where I was for a further fortnight before being put onto a main ward for a further 3 months.

From the main ward, I was transferred to a local rehabilitation unit but unfortunately I suffered a heart attack and so was quickly taken to my local hospital again. I was in my local hospital from May to December 2010 and then, 3 days before Christmas, I was transferred to the Intestinal Failure Unit (then B4) at Salford Royal.

In January 2011, there was significant concern about my dehydration and nutrition and so I was recommended for TPN. I had never heard anything about TPN before but details were explained to me and I had my line put in under local anaesthetic before commencing my feeds.

I remained in Salford Royal until April 2011 when I was discharged. I live in Stalybridge in extra care housing now and have done for 10 years, it is lovely and like a first class hotel. I have TPN on a Monday, Wednesday, Thursday and Friday meaning I get 3 nights off, including Saturday and Sunday.

The TPN is administered by BUPA nurses who hook me up in an evening and return in the morning to take me off. I get a delivery of TPN every fortnight and I haven’t had any issues with any element of this service, I can’t praise them highly enough.

I am now 90 years old, I am 91 in January 2016 and have been on TPN for 5 years. I don’t know whether I was the oldest person to be started on TPN but I think my consultant may think I am the oldest person now on it. I understand that it is something which frightens some people and I feel for those who can’t have anything to eat, I am on a limited diet but I can eat but the TPN hasn’t been an issue for me and it has allowed me to live my life. I have two stoma bags in situ and they can prove difficult as accidents with them can be so embarrassing. There was a time a few years ago when I was frightened to eat because of potential embarrassment and my weight fell to 7 stone. My consultant explained that I needed the TPN and over time I overcame the fear.

I did ballroom dancing up to the age of 79 and but for the osteoporosis I would still do it. I go to outpatient appointments every 4 months and it was at one of these that they found that I had both multiple gald stones and a scan on my spine showed the osteoporosis. I use a wheelchair when I am out and a walking aid indoors but I do suffer pain with the osteoporosis. It is heartbreaking when you have led an active life like I have.

As for the team at Salford I have nothing but praise for them. There has always been such a team approach which is superb and I can’t thank everyone at Salford Royal enough for this. 

This is my account of thoughts and feelings on my way through my illness. 

Some call it a journey – but I prefer to call it a roller coaster ride, not just for the ups and downs of the ride but in that it involves family, friends and in some parts the hospital staff.  It is not just you, the patient, in the ups and downs, and the highs and lows. 

My ride began in mid-February 2021.  You can get on the ride by choice, by accident or just bad luck, mine was the latter.  I had a very large hernia under my ileostomy that subsequently burst causing sepsis which happened at my local hospital, in Barrow. 

As I was so ill, I was admitted into a hospital for six weeks; after this time, I was transferred to the Intestinal Failure Unit at Salford.  While coming out of the coma, I had some weird but not frightening dreams, so beware.  When finally, fully awake I could not move any part of my body. I was swollen all over and very scared and confused. 

This is a complication of long-term coma use known as Complex Case Syndrome, which affects one in two patients that have sepsis.  My nerves were not communicating with the nerve endings or synapses so there were no movement messages that were getting through.

I honestly wished I was dead. 

The nursing staff contacted the mental health team and they put me on antidepressants.  Then came the Physiotherapy team, we slowly started in moving arms, legs, fingers, toes then progressing to sitting on the edge of the bed.  I never realised how hard such a simple task could be.

Eventually over time I was doing more exercises such as, walking with the Zimmer frame, the walking stick, then unaided, and walking up and down the stairs. If it looks easy, I can assure you it is not.  Everything you took for granted, needs to be re-learned at great effort. 

The encouragement you get from all the staff is fantastic.  You do your task then they expect you to do a little more!

When you have done something well, take the praise as you would have earned it.

So, this for me is near the end of my roller coaster journey. Number two ride is when I go home and start learning life – please remember these five things:

1. Rehab is not easy.
2. Do as you are asked, listen, and try hard.
3. Be stubborn with yourself
4. Set stretch goals.
5. Persevere.  

In conclusion, I could write about the highs and the lows, the pain, or the pleasure.  But this is my ride, you may be different, better, or worse, good, or bad. But remember it is just not you on the ride. Involve and get support from family, friends, staff, and anyone who can and will help you.  There will be tears and anger, but stay stubborn, set goals, and remember “what doesn’t break you, makes you stronger.” 

 Thanks for reading my ramblings. It has not been easy thing for me to revisit.  I hope this will help others find their true spirit. 

I was first identified as having gastrointestinal difficulties in Scotland and had my colon removed there three and a half years ago. There was no appropriate follow up and I was looking for a service that would meet my needs as it appeared to me that Scotland’s response was to let me go home to die.

There was a media campaign to get me to the Intestinal Failure Unit (IFU) at Salford Royal and I had a number of the unit’s previous patients highlighting that there was an IFU and singing its praises.

When I arrived at Salford Royal, I was struggling with Post Traumatic Stress Disorder due to a number of infections and poor experiences in hospital. In fact, I recall having a panic attack when arriving at the IFU but the reaction to this was different to anything I had ever experienced before. I was sat outside the unit and medication was provided to calm me down but there was no pressure from the nurses for me to go onto the unit and they instead listened to me and my concerns.

When I got onto the unit I began a careful process where I was assessed and the description given by the team looking after me was ‘putting the pieces of my jigsaw together’. It was not a quick process, it is an extensive process and people need to be aware of the intricacies involved.

From the initial assessments, it was clear that I had intestinal failure and so needed TPN for nutrients and also needed to be properly hydrated. I was also spoken to about my surgical plan to try to recover what had been done in Scotland.

I undertook the procedures required and everything was going as per the plan until two days before my discharge when my small bowel twisted and perforated. Following this I had a 14 and a half hour operation where I had a jejunostomy to let my bowel recover and they also used an A4 sheet of pig skin during the procedure.

I have had four or five admissions over the past couple of years to do each part of the required surgery and during that time I have been aware that the unit is an example of excellence in practice. I am a nurse by background and so know about healthcare and think that the continuity in doctors, nurses and people attached to the unit is key in providing this excellence. There is nothing daunting about returning to the unit as you know that there is the continuity in your care and you have everything that you require which is huge for patients.

The care plans that are provided are quite clear about what will be offered to you but I think that patients sometimes have a perception that the unit has a magic wand and I feel it needs to be highlighted that despite the expertise of the specialists you need to take on board what is being said, to engage with what they are asking and to get up post op and do what is being asked of you with the therapy teams. If you don’t engage with this then it slows down both recovery and discharge and others have to wait longer to gain access. It is important to keep in mind how desperate you were to get the help you needed and by not following the care plans you care denying others of the specialist care that has meant so much to you.

The unit follows a very clear assessment, implementation and evaluation process and everything is done on this basis. There is also clear use of baseline and always striving to move forward from that baseline. I think that resources are used very specifically and it provides excellent value for money in that regard.

Having nursing staff who are specialised in this area means a huge amount to the patients. They get to know you so well and they get to know when something is bothering you – they have picked me up a good few times when things have been too much and the tears have been flowing.

I have gone from three stomas and a ripped internal cavity to moving to TPN five nights a week, being able to eat small things, not vomiting all the time and only one small stoma.  I am going home on Wednesday and at the end of this process I couldn’t be happier. I have joked that they will have to tear me from the ceiling when I leave on Wednesday. I can’t put into words what the unit has done for me, they first saved my life, they have immeasurably improved my quality of life and they have restored my dignity.

I was diagnosed with Ulcerative Colitis and had my first operation to remove my large bowel at my local trust, followed by a diagnosis of Crohn’s disease over 20 years ago. I had another six or seven operations after this and each time I had surgery my condition got progressively worse. Prior to having contact with Salford Royal, I was sent to a local hospital who had specialism in TPN as I was at a stage where food wasn’t being absorbed. It was whilst at this Trust that a specialist dietitian who had a professional association with a consultant surgeon at Salford Royal suggested that I be referred and was of the opinion that if I needed further surgery then this take place at Salford Royal.

I was referred and from referral it took 18 months to see the consultant surgeon with my first appointment in February 2014. There was an outline of what was going on with my condition and what they could do for me. I had a follow up in the August or September and was quite poorly when I attended, so much so that the consultant surgeon admitted me to the Emergency Assessment Unit (EAU) before I was moved to the Intestinal Failure Unit (IFU).

This was my first introduction to the unit and it was explained that this is where I needed to be for the problems I had and for the treatment that I needed. Initially, I needed a blood transfusion as I had a low blood count. Straight away, even during the introduction to the unit by the sister, it felt different. I think this is because they are used to patients spending a long time with them but it was very informative and told me all about the ward and how it was run.

I was on the unit for three months following that admission as the consultant surgeon wanted me to have some scans done and so these were done whilst I was an inpatient. I had attended the outpatient appointment expecting to return straight home and so to be there for three months was not expected. However, I was aware that I was very poorly when I attended.

I went home in the November of 2014. I had commenced weekend leave some time before this and a decision was made that I could go home to see how I went with a view to coming back to see the results of the scans. I was on TPN and could self-administer this as cultures had been taken from the line by the unit and they were happy with my practice.

I returned to Salford Royal on the 29 January 2015 again as an outpatient but was again extremely poorly; in fact I was more poorly than the last time I had visited. The consultant surgeon again admitted me as an emergency patient and I was initially taken to Ward B2 with a view to being transferred to IFU. The pain team were involved and were able to make me comfortable prior to going to IFU. I needed surgery at this time but they could not proceed as I wasn’t well enough and there was a requirement for me to be without infection for six months prior to this going ahead.

In February 2015, I had three surgical drains inserted to stop fluid from collecting and to remove infection which would allow me to be fit for the surgery I required. The drains worked quite well with one drain on permanent suction which meant I was limited in what I could do. I went home in June 2015 but this was only possible as I had a suction machine at home. I went home a couple of times prior to leaving the unit for short periods to check that everything was working prior to leaving in the June.

In October 2015, the drain on permanent suction became dislodged which meant I was in quite a bit of discomfort and so I sent an email to one of the nurses on the unit and attached a picture of my drain informing that I was finding it difficult to manage. I received a call the day afterwards to inform that they wanted me to return to the unit.

My surgery had been planned for September 2015 but sickness in the consultant team meant that this wasn’t possible and I was transferred to another consultant surgeon. A backlog in cases meant that I was given a date for surgery of the 28 January 2016. The surgery went ahead with five surgeons involved in the procedure. I had a hole in my duodenum and so they used a T tube and removed half of my small bowel, leaving me with one metre of healthy bowel. They also refashioned my stoma and removed burnt skin caused by leaking. They used mesh during the procedure due to muscle erosion.

I left the surgery with five drains and still have four in situ during this recovery period. One is a gastrostomy, one is the duodenum T tube and the other two are surgical drains. There have been some complications following the surgery with certain things going well and certain things presenting difficulty. It is eight weeks today since my surgery but I don’t know when I will be going home. I am currently nil by mouth and have not eaten since January 2015, pre surgery I was only on sips of fluid.

I think the difference between the IFU and other wards I have been on is the encouragement of independence in patients. The unit encourages self-medication in patients which would not be allowed in my local Trust. I administer four injections a day currently. I mentioned that I am not eating but there is a kitchen available for those that are and there is open visiting which means friends and family are always welcome. There is also an overnight room which is able to be booked which is very useful as many patients, including myself, aren’t local. Being so far from home makes you aware of whom your real friends are as many will promise visits that don’t materialise. My mum used to visit me every day but has sadly passed away now and my dad is 70 so makes it up once a week.

Because I have been here for over a year, you become close both personally and professionally with the staff. The staff always encourage you to raise any concerns and issues and I would encourage any patient on the unit to do so. There have been issues whilst I have been on the unit and if I haven’t been able to verbally raise them then I have written them down for discussion with the sisters or the matron. The unit encourages feedback and want to learn lessons when things go wrong. 

When I was 26 years old, I suffered a period of weight loss and bleeding and after referral to my local hospital I was diagnosed with Crohn’s disease. I had an operation to remove my bleeding bowel and quite quickly encountered complications. During the complications, the local hospital were adamant that they had done the surgery that I required and that it was up to me to engage with my recovery, my sister still remembers this time now and tells me how guilty she feels about challenging me during this time because of course now we know that my engagement was not the issue.  

I was told about Professor Irving and the nutrition unit at Hope Hospital, as it was then and went along. There were only four beds then and they found that I had an abscess in my intestine the size of a tennis ball. It was a couple of years after my initial operation when I had my first operation at Hope Hospital which was a stoma ileostomy. I was in hospital for six weeks after this surgery and then was sent away to build myself up.

It was 11 months later that I went back and it wasn’t for another two years that things flared up again and I had a further temporary loop stoma. It was a further 12 months before things flared again and a decision was taken to place a permanent stoma with removal of my back passage.

That was 15 years ago and following this I was coming to three monthly follow ups but was finding everything to be okay. Therefore, a decision was taken for me to not return unless I needed to and I went 12 years without needing assistance. I lived my life during this time, I went back to work, I went to Australia and I got married.

My story picks up again when I went for a hysterectomy, again at my local hospital. The surgeon informed that a hysterectomy would ordinarily take him 35 minutes but as I had undergone a considerable number of operations, he was assigning double this time to the case. When he got inside he found that he couldn’t perform the procedure but he did nick both my bladder and bowel which meant that I had to have a catheter for three weeks.

Whilst I was at home following this procedure, my husband commented that behind my stoma looked swollen and when I looked it was huge, like the size of a melon. I found out that Salford Royal as it now was had a walk in clinic attached to the Intestinal Failure Unit and so I attended there. I was unrecognisable to the staff as I had got married and was no longer using my maiden name but when they realised who I was they commented that I was a blast from the past.

When I was assessed the swelling was found to be a hernia caused by the failed hysterectomy and so last June I was in for three or four days to have the surgery. I ended up staying for about four months as I needed to return to theatre three times, the final time because my bowel had perforated. During this time I was placed on Total Parenteral Nutrition (TPN) to give my bowel a rest. I was then reduced off the TPN before going home.

I was discharged in the October and left with six fistulas which they hoped would heal but things went from bad to worse and so I returned in February with another abscess on my bowel at the side of my stoma and place back on TPN. The abscess has been resolved and all of my drains were taken away on Monday so I am now in a phase of building myself up to go home. I did have four colostomy bags but I am going home with one, touch wood.

I have had vast experience of the unit and I have always found a community feel as we are all in the same boat on here and I think we help each other, just last week I was talking to another patient who told me about an adhesive spray which helps when removing tape from yourself, I have been doing this for 30 years but you are always learning. You pick up different things along the way and it makes life a damn site easier.

People come to the unit from all over the country – you do get lonely and you do miss your family but we all chat together and that helps. I always say that I would rather be stuck in somewhere that can provide the right treatment than stuck anywhere else. They try to make it a home from home and I think it’s great that we have a kitchen and a washroom which provides independence. Just last week I was going round offering to help with any ironing that needed doing, my husband said he could have brought some in for me if he’d have known.

You have a lot of input in your treatment on the unit and it’s nice to be able to talk to the doctors about anything. What might appear trivial to them might not be trivial to me and I know I can ask questions, even if they don’t know the answer immediately; they will go away and find the answer for me. There is a ward round every day which I think is very important and they use a note pad and a pen system where you can ask your questions to the ward round. You often think of things after the ward round and so the note pad is great to scribble in and it also allows my husband to scribble things in to be asked. The doctors use the note pad too and will put in things if you are not there to speak to. In addition, if I want to see my specialist then I can ask and he will come and see me.

There have been a number of times when he has gone above and beyond i.e. when I had my perforated bowel he allowed my husband to come down to theatre with me and when he had to leave he asked him to write his mobile number and said he would call when I was in recovery. He could have got someone else to call on his behalf but he took the time to do it himself and that was of real importance to my husband and me at the time. There was another time where he came to see me on a Friday evening with some test results, I was taken aback when I saw him as when I looked at the clock it was 10:10pm! You get the feeling that the team really care on this unit and that is very important. 

I developed Crohns Disease at age 16 in 1968, for which I was originally treated at a hospital in Manchester. Over the years I have had many resections, ending up with an ileostomy being formed in 1988. Three years later my rectal stump was removed in 1991 in Leeds.

Moving on some years and following a long period of good health, I began suffering from severe cramps. On Boxing Day of 2001, I was admitted through A&E to my local hospital. My admission was by way of heavy bleeding through the stoma. Having not been exposed to such a condition before, the big lumps of congealed blood being emptied from myself into containers many times a day was very frightening. Being transferred to a ward, I then contacted clostridium difficile. I was subsequently placed in isolation at the far end of the ward with no heating! My experience was very poor! I don’t think I saw a Consultant during my entire admission period here.

I was referred to Salford Royal to the Intestinal Failure Unit (IFU) in 2008. I stayed for 12 weeks whilst I was placed on TPN. I remember being very impressed with the commitment of the team, not just specifically to H8 but at Salford Royal in general. I found that most of the people that worked in the hospital and in H8 genuinely wanted to help patients. I have seen staff here two to three hours after they were due to be going home. IFU staff largely go out of their way to help you the best they can.

My consultant in particular stood out to me here at Salford Royal. He always went out of his way to help me and my family feel at ease following any treatment I received. He would come in to visit during his holidays, over the weekends and, late at night to respond to any matters that were arising. He is exceptional. What he does is not a job by any means to him, it’s a vocation. I can’t praise him highly enough.

Aside from the staff at Salford Royal at H8, certain aspects of the ward like the patient kitchen are great. I liked having my own television, when they are working! Sometimes they weren’t, and the remote controls often went missing. The day room which H8 have is brilliant – I would often relax here and do jigsaws, which I had never done before coming here to H8. Doing these jigsaws would pass hours for me, which is exactly what I would need at times!

If you have got to be in hospital, I really can’t imagine a nicer ward to be on than H8. They (the staff) fill you up with full of confidence upon, entering the ward and any treatment you may have.

In 2005 I was admitted into my local NHS Trust where I underwent my first operation for a total colectomy. Unfortunately, the recovery took a while as I had vasculitis of the bowel but luckily I was back in work six months later. I was a postman at the time, so extra care had to be taken to ensure I was on light duties but on my return to work and I found having a bag uncomfortable.  I was the only person I knew who had one and I was still experiencing abdominal pain. On discharge I was told there was a chance I would be eligible for reversal surgery.

There was an initial attempt at reversal surgery, however, I woke to find this had not been successful. There was another attempt in 2007, this time the surgeon believed there was a 95% change of the reversal being a success. Being honest, I had gotten used to the bag but thought it was great that the surgeon was so confident so agreed to the procedure. Sadly, again, this was not a success.

I was becoming unwell again, my wife June recalls that I was sick all the time and conversations with the doctor focused around taking me back into surgery. The Trust delayed as they were waiting for a more senior opinion in the hospital and so I went home following cortisone injections.  They were not effective and the pain was becoming unbearable. To add to my woes, it was recommended that I put in for early retirement at work. My manager was asking for my return date, however, I was too ill to return. After losing my job, I was in and out of the hospital, two stone lighter and suffering from a painful abscess. Upon the recommendation that more surgery was required and with my consultant on leave, I was asked what my thoughts would be about being referred to Salford Royal. I remember saying, the pain I am in doctor, I will go anywhere in this country to get better.

While waiting to be referred June and I had decided that the best option would be to pay to see the consultant from Salford Royal at a private hospital. His response was that I had to go to Salford Royal as I required a serious operation. Due to the delay in getting my notes from my local Trust, I had to have the same tests again. The delays and frustrations continued and in September 2009 I was told that I was to go under a new consultant.  I was a bit wary but I was personally reassured that my original consultant would be operating alongside my new consultant.

I came into Salford Royal and immediately I thought that it put my local hospital to shame; every member of staff from my surgeon to my healthcare assistant put me at ease. I knew the operation was big and I was trying my best to put a brave face on, but I think the staff knew, and they were doing everything to make me feel better.

During the operation it was discovered that I had sepsis. The bloods prior did not show this as the sepsis was all contained in the artificial mesh which had become free and infected and was wrapped around my intestines. The operation took hours as surgery had to keep stopping and starting when I was stable again. I was put into an induced coma as my heart was working very hard to fight the infection. When I arrived back on the ICU, June asked if we had done the right thing by having this procedure as I looked terrible and unrecognisable. June was reassured that had we not of gone through with it I would have been dead in two months.  For the next couple of day while coming round from the induced coma, June tells me I was not myself at all; my memory of this time is non-existent. As I started to come round the doctor asked me if I recognised my wife I responded by calling her by my nickname for her, June said that was the first time she knew I was becoming myself again.

Five weeks following the procedure, IFU became involved in caring for me, they decided that it was best that I got distal fed through my stoma and that I needed to be trained on how to do this myself. The staff were very patient with me whilst training and I insisted on June being trained too, which the staff were fine with. June and I work as a team and if she knew what she was doing then she could help me. I also knew that if I did not learn I was not going home.

All staff were great with me, I will always remember one Friday chatting to the junior doctor who was about to go on leave. He asked how I was as he could tell that I was feeling down, anyway, that Sunday to my surprise the same doctor was at my bedside to see how I was doing. When I asked why he was in, he said that he was just driving past and thought of me. I was blown away by that extra touch. 

Slowly I was allowed to go home for 24 hours at a time; I was building a great relationship with the dietitians and my situation was improving. Back home, however, I became infected with MRSA which delayed a further procedure I needed to remove a second bag. This cleared up and I began to slowly have my life back.

The reason I want to tell this story is to praise the staff at Salford Royal, I genuinely believe I would not be alive today if I had not been referred here. I believe this because when they opened me up and found the creature from hell, which is how I refer to the sepsis infected mesh. I genuinely believe my local NHS Trust would not have known how to handle that, you know the experts are here to deal with it. I will never go to another hospital again; I would stand in the centre of Manchester and sing this hospital’s praises as it saved my life. I have blips, we all do but I know as a patient here that all I need to do is pick up the phone or drop by on a Thursday to the open clinic and I will be looked after. My life has changed, I cannot drink beer or coffee anymore but more importantly than that I am here and I cannot thank Salford Royal enough for that.

I was first diagnosed with Crohns disease when I was 18 years old and had just started studying at Wolverhampton Polytechnic. I had to return home and was admitted into my local hospital. My Crohns proved to be very virulent and within three months of diagnosis I had an ileostomy. After a long period in the hospital and a year out I restarted my studies but at Manchester Polytechnic.

After graduation I pursued a career in IT, reaching the position of Senior Analyst Programmer. My work life was periodically interrupted by spells in hospital and many further bouts of surgery. In 1996, after my condition had deteriorated severely I was once again admitted to hospital. A final episode of surgery was curtailed after the surgeons thought it was too dangerous to proceed, and would have had a catastrophic impact on my quality of life. At this point I was advised to give up work and I was put on palliative care taking large doses of morphine to control the pain.

I was placed under the care of a new physician who had previously worked on the Intestinal Failure Unit (IFU) at Salford Royal, which led to my transfer to Salford and the care of the IFU team. At this point I naively thought that I could just go onto HPN as a simple solution to my problems, and that it was just a matter of being plugged into a machine for a few hours a day. However, following an emergency admission into Salford Royal, I had a series of very difficult operations to remove a huge abscess and virtually all of my remaining intestines.  I was moved from ICU to the IFU where I spent months recovering and being trained on the complexities of HPN.  In late August 1998, after four and a half months in hospital everything was in place for me to finally start my life on HPN at home.

Since then I have lived a life self-caring on HPN seven nights a week for eighteen years, and coped with a high output jejunostomy. There have been setbacks as a result of my illness and living on HPN. I suffer from osteoporosis, and have 3 collapsed vertebrae, and I have fractured both of my femurs plus multiple other minor fractures. Most recently I suffered from biliary sepsis, and was very poorly prior to having my gall bladder removed. I also have several other medical problems to cope with.  However, with family support, I have led an active life, and enjoy a good social life.

Despite the difficulties of life on HPN and having a very high output stoma, I have been able to pursue my favourite pastime of sailing. I first learnt to dinghy sail before I had Crohns disease and continued to sail dinghies into my twenties, despite having an ileostomy. Sadly my deteriorating health made me give up dinghy sailing, but after going on HPN, my interest in sailing was reawakened whilst going out to sea on my uncle's boat off the Welsh coast. Thanks to a generous relative I was able acquire my share of a small second hand yacht with an old school friend, who had a lot of dinghy sailing experience and was keen to get back on the water.

In order to facilitate the sailing, my parents bought a static caravan in Wales, where I am able to sort out my medical needs. We could now go out sailing for the day, but the boat was not big enough for me to contemplate staying on overnight.

After a few years of being restricted to just day sailing my friend and I were keen to go sailing for a longer duration and to be able to venture further. With the aid of my family I was able to pay for my half of a larger yacht.  Although old and only thirty one feet long, after a bit of work the new boat had the facilities and space that I needed to set up my HPN and manage my jejunostomy. Fortunately the friend I share the boat with understands my medical problems and gives me the space and privacy I need.

Over the last six years we have been on many sailing trips up and down the Welsh coast, staying for up to seven nights on the boat. We always aim to spend the nights moored in a marina alongside a pontoon with mains power, which gives us hot water.  Setting up the HPN is not easy on the boat in the restricted space, but by being well organised and extra careful with my aseptic technique I manage. Whenever possible I use the "off the shelf" bags of HPN, because they do not require refrigeration.

Obviously some aspects of sailing can be quite strenuous, although sailing a yacht like ours is a lot easier than dinghy sailing ever was. I am neither fit nor agile enough to do much of the work and so my friend takes on most of the tasks, leaving me to helm the boat, which is my favourite part anyway.

Whilst sailing we get to see the most stunning views of the Welsh coast, with the mountains of Snowdonia in the background. We often come across schools of dolphins that love to show off racing alongside the boat, and leaping out of the water. Of course it's not always like that, and the weather and sea state can make it quite challenging. We have both been on sailing/navigation courses and know to respect the sea. We tend to be more cautious about what conditions we will sail in, knowing the limitations caused by my health.

I hope my story shows other patients who are in a similar state to me that your condition does not necessarily mean that you have to give up on the activities you enjoyed before you were ill. I couldn't sail without the support of my family and friends, but with their help I hope to carry on, and aim to sail further, possibly across to Ireland this summer.