It may be stating the obvious that anyone can end up in A&E but for those of us with chronic conditions, or advancing years, the odds escalate. It’s clearly a stressful time regardless of whether you are the patient or simply accompanying simply them. News reports of long delays for emergency ambulances and extended waits to gain access to A&E itself make the prospects of a visit even more uncertain. For at least three years I’ve been dreading that I would need a trip to A&E, knowing it would probably be a very extended experience.

In the last 11 years I have been an A&E patient four times and have accompanied elderly parents on several other occasions. over that period I’ve had a chance to see how things have changed and adapt my coping strategy accordingly. (I hope that you don’t think I’m over thinking it by having a “coping strategy”. I’ll let you be the judge if you make it to the end of this blog. Maybe you could give me some feedback via Twitter on your thoughts.)

My first two trips were after calling 999 and on both occasions the ambulance arrived within 8 minutes. Yes 8 minutes! Coincidentally it was the same crew each time. The first call (2011) was due to my stoma bag filling, quite rapidly, with blood. The second time (2012) still involved the red stuff but this time I was vomiting it and I had the added bonus of the siren and blue lights. I’ve written about the incidents in my book.

My wife came with me in the ambulance each time. The main lesson we learnt was that, once you’ve been processed through triage, communication is the biggest issue. With a large number of patients being treated it is simply not possible for each one to be given an update every 5 minutes. If a real emergency is brought in then the doctors and nurses are diverted to treat them. You have to wait until someone approaches you to move to the next stage of our treatment.

I found that having my wife with me caused be to become more stressed! Whilst it was great to have her company I know how much she dislikes hospitals. I ended up worrying about how she was coping with the situation as well as what was happening to me. Double the stress, and as we went further into the night it became a question of what point should she call it a day and make her way home.

In 2010/11 I had spent several weeks in a major London hospital so had become relaxed about being in a hospital environment, having cannulas inserted and all the other checks and indignities that one undergoes. Being in London had made visiting difficult because of the distance from home so I became used to spending extended periods on my own. It has subsequently made it easier to cope but I can understand why it is difficult for those new to the experience.

On my third visit (2017) I had turned yellow (jaundice) and my GP sent me off to A&E. No need for an ambulance this time so I arranged a lift once I had packed an overnight bag and walked into hospital unaccompanied.

Having booked in at reception I was taken to see the triage nurse and then returned to the waiting area. At this point previous experience taught me it was into the unknown and the indeterminate waiting would start. Rather than looking at my watch every two minutes or trying to catch a nurse’s eye, each time they passed by, I decided to set a time, in this case one hour, at which, if I had not moved on to the next stage of treatment, I would go to the nurses’ station and ask what was happening. This structured approach seemed to really help.

To pass the time I read a book although it was not always easy to concentrate with all the hustle and bustle going on around me. I managed to keep relatively relaxed. In the end I was moved to a bed in the Medical Assessment Unit, a small ward attached to A&E and I stayed there until I had been seen by a consultant and discharged the next morning. I felt I had managed my stress well for the most part.

My last trip to A&E was two weeks ago (March 2023) after experiencing malaena. In the 6 years since 2017 I knew that the service level had been considerably degraded due to the lack of resources, staff and onward bed blocking. I was convinced that my previous “set time limits” strategy would not work this time. I packed my bag, said goodbye to my wife and then set off for A&E with some trepidation.

Ever since starting to write a patient’s blog in 2010 I have found that the creative process has been very cathartic. The “reporting” aspect has allowed me to be almost at arm’s length and to view my treatment as if I am a third party, detached. I wondered if treating this latest experience as an “opportunity to witness and report the situation at first hand” would help pass the time and keep stress levels down

I decided to regularly Tweet my progress through the system and illustrate with photographs where possible. A distinct advantage of using SoMe to post updates is that you get feedback from others and it helps to feel that you’re not alone through the ordeal. Even in the wee small hours there is usually someone awake that responds. There is also the discipline of getting your message across in the limited number of characters.

I decided to copy some of the Tweets to our local MP so that she was aware of what was happening under her government’s 13 year watch. I didn’t get any response, of course.

I have since compiled the Tweets and photos into a blog which can be found here – www.wrestlingtheoctopus.com/…….. I’ll let you be the judge of how well I coped, or not!

The experience was considerably worse than before and I ended up on a bed in one of the A&E corridors for 14 hours before being sent for an endoscopy and then moved to a ward. I wasn’t the only patient waiting in the corridors.

Again I found that by having a “strategy” I could cope with the mind numbingly boring periods when nothing seemed to be happening. It helped that I was fairly sure what the consultant would find when she scoped me and what the treatment would be. Having been through the same issue before I also knew what the aftercare should be and was able to use this to argue my discharge from hospital sooner rather than later. As I said to the consultant on her ward round – “being in hospital is doing my head in. My recovery will be a lot quicker at home”.

I came away with nothing but sympathy for the NHS doctors and nurses trying to deliver a first class service without the resources they need. I cannot see the situation improving until the care sector is sorted out and patients can be discharged when they are medically ready rather than when they can be found a space in a care home.

Disclaimer : none of this blog should be taken as criticism of the doctors and nurses that treated me. They were struggling to provide a professional service in under resourced conditions.

THURSDAY 9th MARCH 2023

13:00. I had called in to my GP surgery to ask if a doctor could ring me about the malaena I was experiencing. (I’ll let you look that up to save me having to type out the gory details). When I returned home the surgery rang to say the doctor would like to see me that afternoon.

16:30 I explained the problem and that I hadn’t eaten anything since eight o’clock the previous night. The doctor checked my vital signs. All OK. We discussed whether I should go to our local A&E or see if it resolved itself, my preferred option. He went to speak to a colleague for a second opinion. They both agreed – A&E.

I returned home and told my wife the news. We packed my overnight bag as I knew it would be a long wait in A&E, (The last time I suffered malaena I ended up spending 2 weeks in hospital – not all that time in A&E obviously!)

My sister came to collect me and took me to East Surrey Hospital. Knowing that I was in for a difficult time I needed a strategy to cope with the inevitable delays that I would face. It would be a chance to experience the health service in crisis. To pass the time/record my experience I decided to Tweet my progress. (Apologies for typing errors, I did have a cannula in one arm). Here goes…

18:20 Walked into East Surrey Hospital A&E. Handed the GP’s letter into reception and confirmed my details. I asked reception how busy they were that night. Not too bad! Fingers crossed. There only appeared to be 8 potential patients in the waiting area. I did not know how many had already been admitted to the inner sanctum.

After a few minutes I was called in by the triage nurse who took further details about my general health and medications.

19:20 Taken through to the A&E inner area and sat on a trolley in a cubicle.

19:42 A nurse inserted a cannula into my arm and took blood samples then hurried away to get them tested. A doctor would come and see me when the results were known.

20:45 A doctor, in very fetching all red scrubs, came over and told me that my Hb was 115. He had expected worse. My platelets were 120 which came as a surprise as they have been around 55 for the last few years (drug induced thrombocytopenia). The doctor said that he needed to do a rectal examination. I asked him to check my prostrate whilst he was there! No problem! He reported that it was small & smooth (which I think is a good sign). He directed me to a chair in another curtained area.

21:29 I was connected to saline drips together with cyclizine (anti-sickness) and then omeprazole (anti-heartburn) to protect my oesophagus.

21:57 Taken, in the chair, to have chest X-ray.

22:04 X-ray completed and returned to booth in A&E.

22:49 Just over 4 hours from checking in I was sitting in chair in limbo in the middle of A&E.

23:33 Another 2 hours of drips to complete before seeing another doctor. The chair was becoming uncomfortable and no sign of a bed. Midnight approached.

FRIDAY 10TH MARCH 2023

00:33 6 hours from arrival I was moved to a bed in a “Sub Unit”. This may sound very grand but in practice it was a bed, in one of the A&E corridors, signified by piece of paper stuck to wall saying “Sub Unit Bed 3”. Unfortunately it was next to the entrance for ambulance arrivals and the doors to the public waiting area. It was very cold as each time a trolley was brought in the sub zero temperature outside was evident.

03:46 Still on the bed SU3 in the busy corridor wondering what was happening. Communication is always the problem.

04:06 A nurse took my vital signs again and told me I was awaiting the doctor before deciding wha the next step was. Asked if I could have something to eat. Nurse returned with some sandwiches and ice cream. Managed a quarter of the worst sandwich I’ve ever tasted but the ice cream was delicious, albeit very small.

04:42 I went to the nurses’ station and asked what was happening. They were waiting for the medical team to come and see me. They were a bit “snowed under” but should be with me shortly.

04:45 Seen by doctor from medical team. Gave him a copy of my “jigsaw” diagram outlining my medical history which I had had the presence of mind to print off before heading for A&E. He seemed impressed. He was just filling in some details in my notes but I would have another couple of hours before I saw the gastro team.

07:19 I must have been tired enough to drift off for a while. The hospital was now waking up.

07:40 Have been told that the consultants started their rounds at 9:00 so have at least another 90 minutes before I get seen. Just heard nurse say “I’ve got one more bed space in the corridor then that’s it!”

08:08 A nurse came and put up a sign saying “nil by mouth” as “the gastro team might want to scope you. They could appear anytime this morning”. More frustration. She put up another saline drip. I asked if it could be put on a moveable stand so that it was easier to make my way to the toilet rather than have to disconnect it each time.

09:56 Must have dozed off again and during that time the saline drip had been transferred to a stand fixed to the bed and the moveable one had disappeared! Best laid plans….

12:09 It was getting so cold I put on my hat, scarf and coat in an attempt to keep warm. No outside windows so losing a sense of time. It’s midday already!

The gastro consultant and another doctor appeared to discuss my condition. I suggested that a busy, freezing corridor was not an appropriate location for this discussion and that we should find somewhere else. Luckily here was an empty office not far away so we decamped into there.

13:48 I had mentioned to the doctor that my shoulder had been hurting for the last few weeks. I should have mentioned it earlier and it was exacerbated by lying in the draught for hours. A porter arrived to wheel me, on the bed, for another x-ray. I was hoping that when I returned the position by the doors would have been occupied but no, it was still empty and I was back there again. At least it soaked up a few more mind numbingly boring minutes.

14:40 Another porter arrived with a chair to take me to the Endoscopy Unit.

15:00 It was now 20 hours since I had entered A&E and 14 hours on the bed in the corridor. I hoped nobody considered that I was whinging by tweeting my progress. I copied in our local Tory MP for East Surrey so that she was aware of the conditions in A&E. I did not expect a response and did not get one.

15:15 The consultant appeared and asked if I knew what an OGD (upper GI endoscopy) involved and the implications of banding. I replied that this would be my 16th time for having this procedure and that I had had one just 3 weeks ago! (Google oesophageal varices/band ligation for further information). I signed the consent form and preparations got underway. The nurses introduced themselves and I was wheeled into the theatre. Everyone was very friendly and caring. Bring on the burnt bananas (if you know, you know!)

15:37 I asked the endoscopy nurses if it was OK to take a picture of the equipment so that I had a record of when the procedure was about to start. (During my previous procedure at St.Thomas’ I had somehow managed, whilst under sedation, to take my camera from my pocket, carefully frame a picture and took a photo of the unit. I had no recollection of doing it so this time, to be sure, I handed my camera over!

17:30 I opted for full sedation. I always do. Even under sedation I do remember coming to slightly, retching and the nurse putting his hand on my shoulder telling me I was doing “very well”. When I fully came round in recovery I was told that 4 oesophageal varices had been banded.

18:41 I was wheeled to Charlwood Ward. I had spent a couple of weeks in this same ward after the last incident of malaena in June 2012, shortly after it was opened. A fifth bed had now been introduced into the 4 bed wards. Now, over 24 hours from setting foot in A&E, I had a bed on a ward. Fourteen of those hours were spent on a bed in a draughty corridor.

20:02 I must have dozed off yet again but that was understandable from the cocktail of fentanyl and midazolam that I had been given. I did need to see endoscopy report to confirm what I could eat but it was a little academic as no food was available.

21:48 I asked for a copy of the endoscopy report but was told that the consultant needed to explain it to me. It was important to know exactly what had been done during the procedure as it would dictate what I was allowed to eat. The nurse offered me a couple of Fortisips. Clearly I would be in hospital overnight so it was time to change into my pyjamas and try and get comfortable.

SATURDAY 11TH MARCH 2023

I managed to get some more, rather fitful, sleep as my shoulder was causing significant discomfort and the patient in the next bed was crying out in considerable pain. I must have still been under the influence of the sedation.

09:24 I messaged my wife to tell her that I would give her an update when I knew what was happening. Waiting for the doctors to do their round.

10:00 I was concerned that I might miss the ward round but decided to risk having a shower. The world seemed a better place afterwards!

10:13 The consultant and a doctor arrived. She explained again that she had banded 4 varices and that she wanted to keep me in hospital for at least another day. I countered that by saying that the hospital environment was “doing my head in” and that I was fully aware of the implications of having been banded and that, in my opinion, I would recover much quicker in my home environment. I also explained that I didn’t like the burden that being in hospital put upon my wife at home on her own. She hesitated but realised that I might discharge myself (I wouldn’t have done!). She agreed that I could leave that afternoon.

I asked THE question “what could stop me from being discharged”. As long as I had my medication from the pharmacy and the discharge letter then I would be good to go.

11:56 The period between the ward round and lunch is the quietest time on a ward and the best time to get some sleep. it was remarkably quiet. The patient in terrible pain had been taken off to theatre for his surgery and the other three patients were dozing.

12:25 The lunch trolley arrived. I was given a Level 6 soft bitesize meal and was just about to tuck in when it was whisked away from me! I needed a pureed Level 4 meal!

12:30 I was given a puree level 4 meal instead. Whilst it didn’t look very appetising it wasn’t bad and I enjoyed my first proper food for over 60 hours.

13:40 The ward sister appeared with my discharge letter and the tablets from pharmacy. I was free to go. I rang up my brother-in-law and he collected me.

15:01 Home again. Time to reflect upon what had caused my varices to burst so soon after having been given a clean bill of health only 3 weeks previously and to think about what I can do to prevent it happening again. will contact my consultants at my usual hospital to ask their advice.

There will be a second post comparing my previous experiences of A&E and how I tried to make the experience more bearable.

This was written long before the advent of COVID19. You may well be restricted as to the physical items you are allowed to take in with you. Please check with the hospital.

I had been meaning to do this for a while. I compiled my list of ten things I learned would make life easier during my more recent stays in hospital (UK NHS – 2 bowel operations; 1 emergency admission with 2 weeks recovery). I wanted to pass them on in case it helps to improve your “end user” or “patient” experience. I reckoned that if you were already an old hand at the hospital game you could, no doubt, add at least another ten so I posted the link to this list on the Crohn’s Forum (www.crohnsforum.com) and some “old hands” got in touch with “at least another ten” items for adding. Thank you – xxSophiex, IHurt, CDJ, UnXmas, acc929, SickofCrohns. 

Here’s the updated version which has now grown from 10 to 18. I’m not suggesting you take all the physical items listed below with you in one go. I’d go for a phased introduction as your recovery progresses.

One possible risk to bear in mind is not being able to keep your expensive technology securely whilst you’re in hospital. The wards I’ve been on have discouraged the bringing of valuables into hospital for this reason but realistically everyone will want their mobile phone with them. The ideal solution would be for each bed to have a patient lockable drawer/cupboard but I’ve never seen one in the NHS. There may be a ward safe that you can ask for valuables to be stored in but the nurses won’t thank you for wanting access several times a day.

No.1 MOBILE PHONE – it goes without saying that you will have your phone with you but not so long ago you weren’t allowed to use them on the wards. There may still be restrictions in certain sensitive areas. Don’t forget your charger!!!

No.2  HEADPHONES – there are lots of times when you really want to be able to drown out the surrounding ward noise.  Take in an iPod, or similar device, and a pair of headphones. Preferably two pairs – in ear and over ear. Over ear will give you the best isolation from the ward noises but you can’t comfortably lie on one side with them on and your ears tend to get hot! The in-ear ones aren’t as good for keeping out external sounds but you have more choice in your sleeping position. (If your budget stretches to it then a good pair of noise cancelling ones would probably be a good idea).

No.3  EYE MASK – like the ones you have for air travel. It’s very rare to have all the lights off in a ward and even if they are, the nurses will be frequently checking on the more poorly patients so the over bed spotlights will be going on and off throughout the night. That’s where the mask comes into its own.

I haven’t actually tried a mask so have found the best time for dosing is during the mid-morning lull. That’s the bit between the doctors doing their ward round; the beds being made ward round ; having a shower and then lunch being served.

No.4  SHOWER GEL/SHAMPOO –  sometimes these are available in the hospital but there’s nothing like having your own, favourite brand to keep you in touch with home. It’s said that smell is the strongest sense for recalling memories. There is one particular shower gel that I bought ready to go into St.Thomas’ and I’m still using that “flavour” today. Every time I catch that fragrance it immediately transports me back to the first shower I had post operation, a happy time despite the surroundings.

No.5  SOCIAL MEDIA – if you want to keep in touch with the outside world using SoMe then you’ll probably use your phone but if you are trying to write any lengthy items a smart phone can be limiting due to the screen size. I suppose the ultimate is to take your laptop but it’s quite a large item to store safely in a bedside locker so an iPad is a good compromise.

When I knew I would be going in to St.Thomas’ in October 2010 I bought a basic iPad and a wi-fi hub at that has kept me blogging throughout my hospital stays.

No.6  PYJAMAS AND DRESSING GOWN – the admission instructions may ask you to bring in your night clothes but I have found that pyjamas are usually available anyway. That’s fine if you’re not fussed about the colour. After my reversal operation I was issued with bright orange pyjamas so it looked like I had just escaped from Guantanamo Bay. I try and use NHS pyjamas for a few days after an operation in order to give anything that might be oozing a chance to stop oozing and then it’s into my very stylish M and S ones for the rest of the stay.

The dressing gown is a must. Not only can it give you a bit of extra warmth when sitting about but also covers up that embarrassing gap up the back of your medical gown where you haven’t quite managed to do the tie-ups.

No.7  BOOKS AND MAGAZINES – there will be times when you’re not dozing but you really don’t want to watch the truly appalling daytime TV so a decent book or some magazines, preferably with lots of photos and no difficult text, are a good way to pass the time. I was given a volume of Sherlock Holmes short stories and found that each story was just the right length to read before needing a rest.

No.8  CASH – taking a large amount in with you is not a good idea but it is worth having, say, ten pounds in case you want to buy a magazine or some toileteries from the trolley that visits the ward every couple of days. I expect everything is now contactless anyway

No.9  MAKE-UP – I’m a bit out of my depth here because I’ve never worn make-up,. I’ll quote directly what acc929 said :
“ I think this is probably a bit more on the girly end of things, but I’ve found that taking good care of myself (when possible of course) in hospital helps keep my morale up. I think the sicker you look, the sicker you feel, so if you have the energy it’s worth making a little effort. I bring my nice robe so I don’t need to wear the hospital gown, my favourite perfume, and my own shower stuff in little bottles. I bring a tiny bit of make up so that when people visit I don’t need to deal with them telling me how tired I look (I’m in the hospital, duh!) Bottom line, having your own things makes everything feel better.”

No.10  FAVOURITE SNACKS – after an operation or maybe a bad flare-up you may need something to help you get your appetite back. If you have some favourite snacks or chocolate bars etc. pack a few in your bag. Some hospitals have will provide snacks anyway but I don’t know how common it is.  The two wards I spent time in at St.Thomas’ always had a good selection freely available. You only had to ask!

No.11  SANITISING WIPES – with all the nasty infections that appear in hospitals nowadays – such as Mrs.A – sanitizing wipes to wipe down any surfaces or objects that you can’t be certain have been throroughly cleaned or disinfected. (May have been superceded by COVID precautions)

No.12 HAND CREAM AND LIP BALM – the atmosphere in the wards is often very dry so creams and balms will help you keep your skin feeling good.

No.13  LISTS – pen and paper – or you could use an app on your phone or tablet. I have always found it useful to write down any questions I want to ask the consultants on their ward rounds. I’ve tried keeping a list in my head but when you are confronted by the consultant and a gaggle of junior doctors, early in the morning, it’s easy for all thoughts to just disappear.

No.14  PAIN – if you start feeling pain or a different pain don’t be brave and keep it to yourself TELL THE NURSE. It may be nothing and you can be given painkillers to help. On the other hand it could be something that needs attention and the sooner that attention starts the better.

No.15  INHIBITIONS – try and lose any inhibitions you may have about discussing the more intimate details of your condition with the medical staff. You may notice something different about your body or what comes out of it. Again it may be nothing or it might need further attention.

No.16  CANNULAS – if you have to have a cannula and, let’s face it, it’s pretty much a certainty, don’t let a doctor put it in. No matter how much practice they claim to have had they are never, ever, as good as an experienced nurse. In the past I have actually said to a doctor ‘”Are you sure you are good at inserting these?”. He assured me that he was but an hour later I had to have it redone as there was insufficient flow through it. This has happened on several occasions so I stand by my “never trust a doctor with a cannula” statement. 
The positioning of the cannula is governed by where a good vein can be found but if at all possible try and avoid having it on the bend of the arm as you will frequently be interrupting the flow when you move your arm. If you get a choice of which arm to put it in remember you will have eat meals and manage in the bathroom with it connected.

No.17 PHARMACISTS – when it’s time to be discharged I can guarantee that you will be ready to go but will then have to wait several hours whilst pharmacy get the correct medications up to the Ward and you can finally leave. If you make friends with pharmacist on their daily ward rounds you can preempt that wait my persuading them to make sure the necessary tablets, in the correct numbers, are in your bedside locker ready for discharge.

If you live near the hospital you may be able to go home and then get someone to return later to pick up your medication. You may even find that you’re being prescribed over-the-counter tablets anyway, such as paracetamol or Ibuprofen, so it would be quicker to go into your chemist.

No.18 SENSE OF HUMOUR/COURTESY – not always easy to keep hold of this when you’re drugged up to the eyeballs, have got tubes coming out of every orifice and your future is uncertain but if you can do your best to keep your sense of humour and treat the doctors, nurses and other patients with courtesy then it will make your stay a lot more bearable. Of course you may be one of those unlucky individuals who has had a humour bypass in which case you should get on well with some of the doctors I’ve met! 
That’s the revised Top Twenty One. If I had to choose just one physical item to take in with me it would still be the headphones as they give you the chance of getting some sleep in a noisy environment. The one behaviour I would adopt is a combination of the above but can be summed up as “acceptance that a hospital regime will probably be completely alien to your usual way of life but you do not need to lose your sense of dignity, humour or courtesy”. If you feel any of these are being compromised – complain.

Emotions

I’m not an emotional person. I don’t know whether it is simply the way I’m made or that I had any emotion knocked out of me as a defence mechanism to cope with the early death of my father. In some ways this lack of emotion may have helped me survive those challenging experiences and gory sights I mentioned earlier. So I was surprised that, when researching my book, I became quite emotional when reading the account of a meeting with one of my surgeons shortly after my ileostomy. It still has the affect to this day.

“He remarked how well I looked considering: “what they had done to me”. He had joined his old colleagues at St.Thomas’ on the day to take part in the operation which he described as a “classic”. He said it was one of the most complex they had ever carried out. My innards were in a really bad way.

He had a trainee doctor in with him for the clinic and was showing her my pre-operative CT scan. He described it as looking like an octopus. Where had I heard that before? My intestines had, in places, attached themselves to other parts of the body such as the back muscles. That last comment was quite a revelation and would explain the back pain that I had been suffering from for the last couple of years. I dread to think what would have happened if the surgery hadn’t been carried out when it was.”

I’ve tried analysing what triggers these feelings but had not been able to reach a conclusion. Then I heard this. Maybe this explains why…..

Adrian Chiles was interviewing the radio presenter Mark Radcliff about the cancer he had been treated for. Here is part of what he said “I took a little bit of counselling at the Maggie Centre ….I’m not someone who cries a lot but when I went into theCentre the woman, who was counselling me, asked ‘So what point are you up to?’ and I just burst into tears. She said ‘Have you just finished your treatment?’ It’s a very common thing at that point. You realise the struggle you’ve really been through. It dawns on you.”

Maybe it dawned on me just what my mind and body went through and come out the other side smiling and with a very positive view of the future. Do other IBD patients experienced similar emotions?

Postscript

After writing this post I was discussing coping with Crohn’s Disease with my wife and mentioned my theory that a lack of emotion might just have helped me deal with it. She genuinely surprised me by saying that if she had Crohn’s she “wouldn’t want to have gone on” due to the embarrassment of the tests and procedures we undergo, the stress of being taken short and the pain we experience. It brought home to me how differently each of us can react to this disease.

….and the tired? Two doses of Vedolizumab may be the cause of additional fatigue

Why Does It Hurt?

Meet The Surgeon – Friday 8th March 2019 – a visit to St.Thomas’ to see the upper GI surgeon. A surprisingly lovely day and a chance to do some serious walking  along the South Bank of the River Thames.

Last time I saw him we discussed removing my gallbladder and had agreed to put it on hold until absolutely necessary. I had asked for this new appointment to discuss the pain I’ve been experiencing in my right hand side. I wondered if it was connected to my gallbladder (or scar tissue; or Crohns inflammation; or something else). He had a good prod around and was able to pinpoint the exact centre of the ache. (I knew he had found it as when he applied a fair degree of pressure, it hurt)

“You have a small hernia. Usually we would offer you a short operation to repair it but given your history I doubt whether we should consider it“. The history he was referring to was the growth of new blood vessels in my abdomen due to PVT (Portal Vein Thrombosis). The vessels grew to relieve the pressure caused by the blocked portal vein.

I could now understand and visualise the pain. So much easier to deal with. Should I change my lifestyle? “No, carry on as before but if it gets worse then we will have to revisit the situation. You’ve got our contact number”. Should I consider wearing a support belt (as I had done when I had a stoma? “If you feel it helps“.

One Day My Prints Will Come

I mentioned that I had not yet seen the capsule endoscopy report from last November. He called it up on screen. No wonder they were having difficulties printing it. It comprised page after page of stills from the 12 hr video. There was however a summary page and I was surprised to find that it reported active inflammation in the proximal (top end of the) small bowel and a little further down as well. The far end (site of my anastomosis) was clear.

On the train home from London I thought more about why I was surprised and concluded that I really shouldn’t be.  Colonoscopies always showed no inflammation; upper GI endoscopies showed the same.  It was only the elevated calprotectin level that suggested anything was wrong. If that level wasn’t a false positive then the problem had to be somewhere between the duodenum and the terminal ileum. The last small bowel MRI scan had mentioned the possibility of inflammation. Despite this, physically, I felt nothing and still don’t. My digestive system is working as it should.

The Bleeding Clinic – Wednesday 13th March 2019 – off to Guy’s to see the haematologist in the Haemophilia Clinic……but my questions were all to do with general haematology.

I mentioned that there was a proposal that I should start Vedolizumab. Did my pre-existing conditions of thrombocytopenia (low platelets) and PVT (Portal Vein Thrombosis) need be considered? He consulted the online medication “bible” and said that Vedo was gut specific and should not interact with the other conditions.

He would book another appointment with the general Haematology clinic but in the meantime he would get me to provide blood and urine samples. I explained that the IBD Dept. required, and had already requested, specific blood tests. Would it be possible to get these done at the same time? Yes it would and so it was off to see the phlebotomist who removed nine full phials of blood (my previous record being seven).

…then off to visit the new public roof garden before getting lunch

Next steps – off to see my gastroenterologist on 15th April