Silently Screaming.

If I didn’t know what frustration was prior to the past fortnight, I most certainly do now. When you’re relying on hospitals and the NHS for so much, as I do, it’s hard to appreciate the sheer enormity of the organisation, the amount of people they deal with and that to them, my case is no more important than the next persons. My ultimate goal, to get back to uni, is the only thing left which encourages me to make the constant phone calls and emails to move my care forward. 

As I mentioned in a previous post, the majority of my EDS care is being moved to UCLH. Whilst it won’t happen overnight, this will hopefully result in more co-ordinated care with everything ‘under one roof’ and a team who can work together. One of the things that UCLH were going to take care of was my ileostomy, which initially was planned to be done at The Royal London. After three months of phoning The Royal London to chase up the clinic letter and my appointment with the stoma nurses, it has come to light that my notes and the dictated letter were apparently lost in the NHS cyber attack, and the consultant claims he has no recollection of my consultation. To say this was frustrating would be an understatement; since my appointment in April I thought I was three months along on the waiting list by now, and it turns out I wasn’t even put on it! Waiting for another appointment at The Royal London seemed like a waste of the next few months, and so with confirmation from the consultant there that the situation of not even being on the list was indeed the case, I have decided the best thing to do will be to allow UCLH to coordinate my care, and see what the team of numerous specialities feel would be best for me.

A multidisciplinary team has been set up at UCLH, and they met a couple of weeks ago to discuss the procedures such as my port replacement, the ileostomy and formation of a PEG; I am yet to recieve the report of decisions made but I hope however things move forward there will be successful intervention to stabilise my condition and improve my quality of life from what it is now. More than enough tears have been shed over the past few weeks – to put the frustration into words is almost impossible. I’m so beholden to hospitals and medical professionals, and I have next to no power in getting things done. A complaint to PALS may at least make me feel like there is closure on the situation, but it won’t get the past three months of waiting for nothing back. 

My dislocations have been getting more frequent, particularly my right knee which has been so problematic. I had an MRI on it, which showed that my kneecap is at a complete slant where my tendons are not strong enough to pull my knee-cap back into the place where it should be. The angle at which my knee is results in it being weaker and so more prone to dislocating, so I’m in a vicious cycle with it. I’ve been referred to Guy’s hospital to a surgeon specialising in issues such as mine, who will consider operating on it. I’m open to any suggestions he may have, although I was told at a local hospital that surgery may only provide around a year of relief until the tendons have stretched again and the problem will return. The other worry I have is that, as with all my operations, I’m often classed as too ‘high risk’; I have a condition that needs surgery to help aspects of it, but the condition makes me too risky to have the operations… I can’t win! 


Even more challenging than the physical symptoms I find are the mental implications of having conditions such as mine. Living day in, day out with things such as catheterising, irrigation, requiring wheelchairs, dislocations and taking numerous medications is so hard. Whilst my anti-depressants have been increased the benefit is limited, and I would do anything to have a sense of ‘normality’ back in my life; to do simple things that people take for granted everyday such as walking, getting out myself and having independence is what I long for more than anything. In the middle of the frustration, upset and depression that I am currently experiencing it is hard to remember that I should be grateful for what I do have, in particular my family who I would be nobody without. Jeffrey’s cheekiness also brings light and laughter to even the darkest of days and I couldn’t imagine life without him.

What next? 

The past couple of weeks have flown by; they’ve been crammed full with appointments but I don’t have anything significant to report apart from my continuing frustration which seems to be a prominent theme throughout my blog.

Powerchairs;

One of the main things that I’d been waiting a while for was a meeting between my OT, physio, wheelchair service and I about a power chair. I feel an electric wheelchair/scooter of some kind would improve my quality of life as I’m unable to self-propel my manual chair due to finger dislocations, but the wheelchair service pushed their concern about me deteriorating with an electric chair through becoming lazy and not using my gutter frame when I am able. For all my faults, I’m not lazy and so would use my frame on good days, but the meeting was left with the council not providing a chair, and I have to contact a list of charities to apply for funding in order to be able to purchase one. Just another thing to add to my rapidly increasing to-do list!

Port-a-cath;

I have had a port-a-cath in my chest for almost a year now, and it has been troublesome from the start. It was poorly sited at St. Mary’s in Paddington, making it really hard to access and the problem has only got worse with time. There are only very few nurses who can successfully access my port and it’s just not feasible to get to St Mary’s to the one vascular nurse who can access it for my bloods on a weekly basis.


It was back in March when the district nurses reported to the vascular team at St.Mary’s that there was the fear my port was turning, but in any case it was getting increasingly difficult to access. Over the past four months, I have written countless emails, obtained letters of support and done anything in my power to push for my port to be replaced. This is because I need a reliable port for sedation/meds to be administered via for some major operations, and I don’t want an unreliable port delaying treatment and procedures I need doing.

There has been excuse after excuse to why my port is not being dealt with, but it all came to a head on Friday when I received the letter saying that, as I’m not under a Doctor in the hospital, they are having no more to do with my port and I have to go to my GP to be referred for this port to be removed and the new one inserted.

Percutaneous Endoscopic Gastrostomy;

I have been waiting months for my PEG, with the need for it rapidly increasing as my swallow function is deteriorating. I finally felt like I was getting somewhere when I had an appointment at King’s to discuss it on Friday, with a provisional view to having the procedure on 11th June. This was all too good to be true, as when I attended the appointment, the consultant told me that I’m showing some signs of MS, and so a brain scan should be done before the PEG to see if there is anything else going on which needs to be treated.

The way I feel at the moment, I can’t face any more tests and to be honest, if there is anything else sinister going on I’d rather not know. I came out of the appointment in tears as I’ve been so desperate for my PEG, to take the pressure off me when I am unable to swallow and more than anything to provide an alternative means of getting my tablets in when I’m unable to swallow them. The consultant has to now discus the situation with some of the other doctors involved in my care and so it is another waiting game until I know what will happen going forward.

What next?

Every aspect of my health care recently has been a fight; phoning to chase up appointments, writing emails, having arguments, chasing up prescriptions and filling in forms just consumes the entirety of my days at the moment. I had improved with coping slightly, but this past week I’ve really been struggling with my mental health. I’d rather have 100 more physical symptoms than have to suffer the mental implications of ill health, but there’s just no getting away from it. There are days where the inability to carry on just becomes overwhelming; this week has been particularly hard seeing the graduation ceremony’s at Cambridge, a place where I should be next year but my illness is stopping me from doing so. I can’t even express how much I want to be back at university. As I write this a tear is rolling down my cheek- I didn’t work the hardest I ever have to gain my place at Cambridge to lose it to illness. I can’t wait to be back there, but I’ve got to get through these rough times first, endure a few operations and hopefully be in a more stable position to resume my studies. 

“Your illness does not define you. Your strength and courage does.”

I can’t stay away.

Agony. I started this week off with a knee dislocation.

I had only been discharged from Medway Hospital for a week and still suffering the ill effects of glandular fever when my knee decided to come out of it’s socket as a result of very little movement or pressure. The pain was overwhelming, and whereas usually I can manipulate my joints as needed, my knee just wouldn’t stabilise and I was relying on topping up my usual Fentanyl constantly to try and control the pain.

On Wednesday my Mum and I decided that we really did need to go to A&E. As time has gone by, my ability to know whether or not hospital intervention is needed has greatly improved.

Costa to get us through the waiting times…

 The hospital was packed; a constant stream of paramedics were bringing patients in, there were people covered in blood, people being sick, patients shouting out all making an environment that was very hard to cope with. Sitting hoping the five hour wait would hurry past, the overwhelming thought that I long for nothing more than to be ‘normal’ came to the forefront of my mind. Is it really too much to ask to not constantly be in hospitals? To have a day that doesn’t revolve around taking medications or partaking in treatment?

A sight that I see way too often

We were finally allowed home just after 3am, and as a result of seeing the doctor, my knee was back in place, I was fitted with a ‘cricket bat’ style splint which I have to wear to immobilise and support the joint and I have been made an appointment in the fracture clinic for the 19th June. As is the case with all my dislocations, I could have come home with my leg in plaster for the initial recovery period, but between the doctors and I it was decided that this wouldn’t be the best way forward as my other joints aren’t strong enough to support the cast.

I’ve got another 10 days before I’m seen in the fracture clinic for the initial swelling to settle, and I will then be fitted with a hinged brace. This will enable me to slowly increase the angle through which my knee is able to bend, enabling it to heal as much as possible and decrease the chance of a subsequent dislocation (although I’m not sure how successful that’ll be!).

Being unwell recently has been relentless, and I need a break. There isn’t one part of my body that isn’t impacted by illness; infections, dislocations, catheterisation, irrigation, taking meds, injecting myself and the list goes on. I would give anything for a day of feeling ‘normal’ but I am grateful for what I do have, and part of that is the most wonderful family I could ever wish for who are there and constantly support me no matter what. It may just be me with the official diagnoses, but my family have them too as they never make me feel like I’m facing my battles alone. ♥

Glandular Fever.

The past week has been an absolute whirlwind.

I knew something was coming on as I felt so achey and fluey but had nothing to show for it; on Sunday it all came to a head. I was really struggling to swallow (even more than usual) and so my Mum took me to urgent care. My tonsils were huge and after seeing three different medical professionals there they sent me to a local A&E due to the complexity of my other health conditions.

 

We arrived at Darent Valley and after the doctors had a look, I was told I really should have come earlier. My tonsils were huge and obstructing my airway so I was given strong IV antibiotics, IV steroids, fluids as I was struggling to drink and goodness knows what else. I was then blue lighted in an ambulance to Medway where they have the local ENT specialists, but this was done as a matter of urgency as the integrity of my airway couldn’t be maintained.


When I got to Medway I had various IV treatments and was told I’d have to be admitted – what I’d been dreading😫. My bloods came back showing positive for glandular fever and gave me a reason for why I was feeling so unwell. After three days in hospital I managed to convince them to let me home. My tonsils had shrunken slightly due to the steroids, and I was sent home with a course of another 10 days of antibiotics, and an appointment to be seen in clinic in 6 weeks to consider having my tonsils taken out. 

I feel unbelievably exhausted, but I’m so glad to be home; the main reason for this was because my best friend was 21 yesterday. I hadn’t seen Katie since briefly at Christmas, and we have both been battling horrific illness and dealing with hospital admissions etc ever since. I wasn’t going to miss her birthday for the world, so with the help of her step-mum I arranged to come and suprise Katie in Brighton with my supportive parents agreeing to get me there.

Yesterday was one of the days that to me shows why it’s worth it to carry on battling. I had tears of joy when I saw my bestie, and we were both so overwhelmed. Despite wheelchairs, medications and illness, I had a day where I felt like a ‘normal’ 20 year old.

I feel so lucky to have a best friend as supportive as Katie, and despite not seeing each other for six months it was like we had never been apart.❤

Jeffrey loved his first trip to the seaside and coming to meet his Auntie Katie on her birthday 🐶

 To say the past week has been difficult would be an understatement, but every cloud has a silver lining; the one that has come of illness being the strongest, most wonderful friendship I could ever imagine. 👭


Side by side or miles apart, true friends will always be connected by heart.

Ileostomy.

29th April. Today. It’s the day I’ve been waiting for throughout the past few months; an appointment with a specialist colorectal surgeon who has a lot of experience with EDS patients. 

The degree to which my EDS impacts my bowel has been getting increasingly worse. I’m fortunate that my Crohn’s has stabilised on Humira injections as the EDS has led to numerous laxatives being required, in addition to irrigation, enemas and frequent colonoscopy bowel prep. My most recent hospital admission was due to my bowel being on the verge of perforation, and it was evident that the regime of medications I was on were no longer working, and something needed to be done. I was fortunate that on that occasion the bowel prep finally had some effect and I avoided emergency surgery, although I didn’t think it’d be long until surgical interventions were needed. 

I went to the Royal London Hospital today with my parents who have been there for me through everything life has thrown at me. The surgeon was very understanding of my position, but told me what I was hoping not to hear. I had exhausted every medication regime, irrigation pattern, enema frequency, and he advised me that the best way forward would be to have surgery to form an ileostomy. 


Ileostomy. Stoma. Bag. I had been expecting this news, although I couldn’t accept it myself; as I write this post my vision is blurred by tears. Now I’m home, I still don’t think it has quite sunk in. I’m 20 years old, and I’m going to have a major operation to change how my body looks, to make me slightly different to healthy people and make some changes in my life. I’m holding on to the hope that in addition to the physical changes, it’ll also improve my quality of life as the truth is I just can’t carry on with how things are at the moment. In theory I have made the decision to have the operation, but quite honestly there wasn’t a choice. 

It’s going to take a while to sink in, and I just hope I can get my head around things; I have a bit of time as the waiting list is months long as I want the particular surgeon to operate due to the complications my EDS brings. I’ve been told that the stoma may hernia which is common in EDS patients, but that can be dealt with if they arise with revisional surgeries. I’ve also been told that, as my bowel isn’t going to be taken out initially, I may still need my Crohn’s medication although as my colon isn’t being used, the problems may just ‘fade away’ which is the topic of a really interesting area of research at the moment. As my colon will still be there, it’ll still produce gas and mucus and if this becomes troublesome the surgeon will operate again to remove my bowel and potentially form a different kind of stoma. 

Writing my blog posts help, but it all still doesn’t feel real. I really hope that things will get easier with time and next time I write a post I’m in a better position with things. I really am so fortunate for everyone who has text or been there today; I really wouldn’t cope without you all. 

Sinking.

Another month has passed and my ill health has continued to be as relentless as ever; trying to keep positive is getting increasingly more difficult and any sense of normality has been slowly slipping away. 

I had a blood result relating to the function of my liver come back at over double the normal range, indicating that my liver wasn’t working as it should. It was thought that this was caused by a gradual increase in one of my Crohn’s medications, and so I’ve decreased the tablet back to the original dosage and am having to have repeat blood tests weekly until it stabilises again. It’s a worry as the level of the medication in my blood was very low hence the dose increase, and I need it to help stop my body rejecting the Humira. My biggest fear is having to go back on high dose steroids as the Humira has been the ‘wonder drug’ in enabling me to cut down the steroids, but it’s something that very frustratingly is out of my control. I’ve continued to have hydrotherapy, and I really enjoy being in the pool but despite that and community physio my dislocations have continued to be relentless. 

Mentally I’m really not coping. There’s no denying it and there’s very little that can be done to help. I’ve been tried on various antidepressants at different doses and seen counsellors, psychologists and psychiatrists with no improvement. I’m 20 years old and I’m dealing with catheterising, irrigation, wheelchairs and countless medications just to name a few; I’ve been totally robbed of my independence and of the life at university I’d dreamed of having. I’m beyond people telling me to ‘stay strong’ and ‘keep going’ as there is no choice but to do that, but having to deal with illness and it’s effects day in, day out is something I can’t cope with for much longer; I’m sinking. 

I had an assessment at Stanmore and have been accepted onto the three week inpatient rehab programme there. In a couple of months I’ll be admitted for three weeks from Monday to Friday for a pain management scheme with physio, hydro and psychotherapy support. I’m hoping that’ll give me an alternative view on my life as it is and help me to accept what is happening and help cope with the situation. My bowel function is deteriorating rapidly and a stoma is now being seriously thought about; I have an appointment with a colorectal surgeon at the end of April to discuss the options. Daily irrigation, a complex laxative regime and enemas just aren’t working and are hugely decreasing my quality of life – I’ve exhausted all the options and I think the operation may be the best option. It’s such a hard decision to have to make, and if my bowel had previously perforated and I’d been rushed in for emergency surgery I wouldn’t have the option; I, of course, wouldn’t want that to be the case but to actually have to make the decision really is difficult.

I had test results back showing that my lungs only work at 46% of what is expected; the cause of this is unknown but the test has to be repeated on Friday at King’s College with the consultant observing so we can gain a greater understanding of what is happening. It is also thought that I have a type of sleep apnea with the top of my airway collapsing as a result of the EDS and so I’m waiting for further respiratory reviews.  I now have splints for my thumbs and fingers which I’ll use when they’re at the greatest risk of dislocation and I’m waiting to be seen by the appliances service at the hospital to see if any other splinting etc could be of benefit. It’s so hard when the weakness is so widespread; I can have a splint on a joint but then another one dislocate (which is what happened earlier with my ankle!), so managing the condition isn’t easy.

I truly do wish I could come on here and write a really positive post, but unfortunately it wouldn’t be a true reflection as I really am struggling at the moment. I still do recognise that we have such supportive friends; organising craft sessions to help me take my mind off things (I’m so proud of the doll I made!), just popping in to see how things are and sending little cards or texts remembering that I have certain appointments really are so kind and do help to lift my mood. I can only hope that going forward each little part of my illness can be managed better and co-operation between different specialities can help improve my condition. ‘Happiness can be found, even if the darkest of times, if one only remembers to turn on the light’. 


Another Admission…

Admission. The last thing I really wanted to think about since being in hospital for three months last year, but all too soon I’ve been admitted to hospital again. It was only for four nights this time but that still was four nights too long and full of stress, worry and a lot of time spent in tears. 

My bowel has been gradually stopping working despite different laxative regimes. I’ve also had to try irrigation but have to be careful not to flare up my Crohn’s (nothing is ever straight forward). The laxatives I take are rotated weekly to try to keep my body’s response to them as effective as possible but recently nothing has been working. I was then advised to take Picolax which is used for colonoscopy preparation, and despite taking nine sachets of that in a week it still didn’t work and there was nothing else the GP could suggest; after taking advice from the district nurse I came to A&E last Thursday.

I was sent for scans and blood tests, and they revealed that my large bowel was completely full and on the verge of perforation. We then had to wait to be seen by a surgical team to know what the next step would be. By this time it was almost midnight and my Mum, sister and I were drained. It was agreed that I would come back the next day into the ‘Ambulatory Care Unit’ and have Gastrografin which would hopefully work to clear my bowel out. I returned the next day and was seen by a lovely consultant who explained to my Mum and I that I really did need to be admitted so any medication administered could be monitored and the risk of my bowel perforating minimised. 

A surprise visit from Jeffrey!

I was started on Moviprep which I’ve had before in preparation for colonoscopies etc; it’s so very hard to get down and regardless of it’s previous potency (when I had to drink it in the loo!), my bowel function has deteriorated so much that it had no impact whatsoever. As usual it was a struggle to get a cannula in, and I was given IV fluids which, when I woke up in the morning, had all gone into my arm as the cannula had tissued, and my arm and hand severely swollen from the fluid. I was eventually visited by an oncology nurse who had experience in accessing port-a-caths and so further fluids and anti-emetics were given via that.

 

A sight that’s been too familiar…

The staff here were at a loss as to what to do next and were trying to contact my other consultants for advice. Daily I had two or three jugs of Moviprep and there were talks of surgery, stomas and needing a bag. Gradually the laxatives began to work, not as much as was expected, but it was still an improvement and enough to buy me time between now and my next specialist gastro appointment to wait to be able to discuss longer term plans and the need for surgery then. I’ve managed to persuade the staff to let me home and I can continue the recommended medication etc there; I can only hope that I manage to stay out of hospitals for a while but unfortunately the admissions are inevitable. 
I’m so grateful for my family and friends who have been my absolute rock throughout this nightmare admission; it’s the most difficult thing watching everyone carry on with their lives whilst I’m lying in a hospital bed with my life falling apart. I never imagined I’d be coping with these health issues but I just have to make the most of every day and be grateful that, thanks to my family and best friend, I’m not facing them alone.