Thursday, 24 November 2022

First Gastroenterologist appointment at Adult hospital

 This is a brief update of Lucy's condition with her bowels so far which I wrote for her first visit to the gastroenterologist. 


Lucy has a history of gastro problems all her life. She has always had incontinence and has poor control of her bowels. She suffered constipation a lot and the incontinence nurses suggested dis-impaction which we tried many times over a few years. Every school holiday we would spend with her taking Movicol until she was completely runny. The constipation would return. We stopped going to the nurses when she was 13 yrs old.

She also has an overflow when she is constipated which she has no control over.

More recently she has suffered more and more diarrhoea which was not like the overflow. 

The situation now is that she is constipated or has diarrhoea, it's very rare that her faeces looks normal. Even the more solid faeces is slimy. 

We saw a gastro Dr at the Children's hospital when her GP referred her after a particularly bad period of diarrhoea which had shown blood in her feaces. The Dr said she had found calprotectin in her sample but it wasn't very high. A second sample showed the calprotectin was even lower. The advice was to give her loperamide to make her faeces more solid and Movicol to move it through her body. It worked for about a couple of months and then she had another really bad period of diarrhoea. I gave her more Loperamide which resulted in constipation. She refused the Movicol as she didn't want to the diarrhoea back. 

We had a telephone consultation with a general Dr at this hospital about her problems and they said to use more Loperamide when the diarrhoea started so we could stop it sooner. 

Lucy became reliant on the Loperamide to stop the diarrhoea but the constipation became more of a problem. So we stopped everything. The GP suggested peppermint oil which helped a little. 

We took her to A&E after a 7 day period of diarrhoea and she was feeling really unwell on 19th July. The Dr said he would write to our GP and request they make an appointment to see a gastrointestinal doctor. We had to visit the GP and make the request ourselves and have been waiting since then. 

Since July Lucy has had four week long boughts of diarrhoea and has suffered constipation inbetween. We have stopped all medication as nothing was really helping. 

Then on 19th August Lucy was admitted to hospital after retaining urine (over a litre) and couldn't go to the toilet. They said she was really constipated and gave her two suppositories which eased the consitpation. Lucy was catheterised for a couple of days. Then she was sent home. 10 days later she retained again and the catheter was replaced. She is still catheterised. 

On speaking to the Dr during Lucy's hospital stay we were told that the retaining could be down to her Elhers Danlos Syndrome, and this could also be an issue with her bowels. The nurse at her last urology appointment told me that her urological problems would not get better unless her bowels problem were sorted and offered to write to her GP. 

Lucy is underweight and although she has never really been very large, she has also never been this skinny. She has definitely lost a lot of weight in the last two years. 

Diet: She likes nothing better than meat and vegetables. She also likes some processed food like chicken nuggets and burgers and chips. She does not like pasta or rice, although recently she has tried lasagne. She eats little but snacks between meals occasionally. Her snacks are generally biscuits, crisps or cheese puffs, but she does not eat these in excess.  She only drinks soft drinks, not fizzy. She dislikes dairy products but will eat cheese occasionally. 

Lucy is currently having a period of diarrhoea which started on Sunday night. Before the diarrhoea she said her faeces was not hard and she wasn't constipated. I ask her every day if she has been to the toilet and what it was like. 

First Visit, how it went

The Doctor was really nice. he talked about all of Lucy's history and the problems that led us to being at this appointment. He checked all her notes from the other consultants. 

He decided that it was highly probable that Lucy had IBD and will do all the necessary tests. First up she had a ton of blood tests done. It's been shown in the past that Lucy is suffering from malabsorption and there has to be a reason for that. In particular she is very anaemic and has poor vitamin B12 absorption. This can be a sign of an auto-immune condition. The Doctor was quite forward in saying it looked like Lucy has Chron's disease, but she needed testing before a diagnosis could be made. He is willing to do these tests starting with an MRI within the next few weeks. 

If after all the testing it showed that Lucy does not have IBD then she will be diagnosed with IBS and referred to the nursing team who will give her all the help she needs to manage her condition. 

He assured us that no matter what, she would get the help she needed to get better or get her conditions under control. 

Things may be looking up for Lucy, I am hoping that this is the help she needs to get better. 

Friday, 4 November 2022

Coping with a Catheter

 Lucy is coping ok right now. She's in a lot less pain anyway, and getting used to her bag. We've learnt how to change it and how to add the night time bag. She can do it herself now. She has an ultrasound scan booked on 22nd September to see how her bladder and kidneys are holding up. There was some mention of vEDS in the hospital but Lucy has been genetically tested for this so it's highly unlikely that it's the cause. The geneticist did say that nothing was certain, but we are focusing on 'unlikely.' She has her own district nurse team which are on hand if we have any further problems...hopefully this will mean no more A&E and hospital. She has boxes of supplies and a cabinet of medication. And is now awaiting her Fortisip to try and help her gain a little weight. We still haven't had the results of her MRI but I'm sure if it was bad news we'd know by now.

Next up is tests on her bladder from the Urology dept, which is booked 18th October and she may have her catheter removed then. Next step is to lean how to self catheterise. It should all be sorted by her next appointment which is 22nd November. Fingers crossed.
We are still waiting for her appointment at the gastroenterology dept. I think her gastro problems are the main cause of all of this but we won't know until she is seen. We do know that the first time she was admitted to hospital that her bowels had crushed her bladder. So we can't fix one without the other.
That's where we stand right now. She hasn't been out of the house yet, but with the right clothing the catheter can go unnoticed and she is not in pain anymore.


Catch up on Lucy. She had her Ultrasound on 22nd September and every thing seemed OK. Her kidneys looked better which was good. Today she went to the Urology clinic for the first time . She had the catheter removed and then had to drink a jug of water. She then had to wee, but it wasn't good. An ultrasound showed she was still retaining. She tried again. More water drinking and another wee. More came out this time but it wasn't enough and again the scan showed she was still retaining. She was given the opportunity to learn how to self catheterise but she said she couldn't do it. So she had the catheter put back in. It's obvious her bladder isn't working but we won't have any answers for a couple of weeks. Then she's back at the clinic for urodynamic studies which sounds pretty awful but we will get the answers we need to go forward.

31st October

Today we had the results from Lucy's MRI which she had on her last hospital stay. They are requesting her notes from the Children's hospital because they have spotted something on her spine. I don't want to spurt jargon that I know nothing about but we will have answers soon. On Wednesday Lucy will be having all sorts of tests done on her bladder to see what is and isn't working. Then at the end of the month it's back to the clinic to find out the answers and maybe the thoughts on the MRI scan. At the moment, it's looking like she will be catheterised for some time so she really needs to learn how to do it herself. I'll let you know how she gets on.

What Happened to my Daughter and Elhers Danlos Syndrome

This is the story of what happened to my 17 year old daughter Star, and how her Elhers Danlos Syndrome caused her to end up in hospital for nearly four days.

Friday 19th August began with a visit to the GP with Star. She had been for blood tests the week before and the GP said they would help her with her tummy problems. When we got there a different GP told us of all the vitamins that she's lacking from her blood tests. Then she looked at me accusingly and asked, 'doesn't she ever eat?' So, once again I explained about her tummy problems and how we are trying to find the foods she can actually eat without making her really poorly. So the GP wrote a request for a specialist to see her at the hospital.

Later her boyfriend came around and she was one happy girl. She was looking forward to going out for her birthday and excited about her gifts and special day. Then on Friday evening she told me she hadn't been able to pee all day. I thought it was a bit worrying so I told her I'd get some medical advice in the morning and said she should get some sleep. I was completely shattered myself and I know she was too. She lasted a couple of hours, then my eldest daughter told me Star was crying in the bathroom.

Her tummy was swollen and she was in a lot of pain so I called 111. They told they could send an ambulance but it would take about 11 hours!! But they said she needed to be in hospital within the hour. We quickly got dressed and off we went in the early hours of Saturday morning along the dark and quiet roads.

Accident and Emergency

The A&E was not so quiet though. There was even some woman lying on the floor across the entrance refusing to go home. There were security guards that had to drag her away just so we could get in. Poor Star wanted to go back home straight away. We didn't even get to say goodbye to her Dad as we were quickly hustled inside.

We booked in and was seen by a nurse after 2 hours. Star was really hurting, but there were a lot of really sick people there. When she was finally called things moved pretty quickly. She was taken into a room for an ultrasound and they could see how bad things were. She had more than 1300ml of urine in her bladder. Another hour and she could have easily burst it. A catheter was put in, the experience was a complete nightmare for Star, but she was incredibly brave. We have lots of coping strategies when things are tough to get through and she started talking none stop about the circus we'd seen on holiday, telling the nurse every minute detail. It was her way of taking her mind off things and it worked.

Then she was moved to cubicle where we spent 7 1/2 hours. Star managed to sleep a little. I did nod off a few times in wheelchair. I was dreaming of the wheelchair that Graham had sent me a picture of the day before, a reclining one with a headrest. Problem is, we could only afford it because it came from China and the reviews of the ordering and delivery process were dire. A wheelchair like that in this Country would cost us three times as much. Anyway, I digress!

Eventually she was moved up to  a ward, but they didn't have a bed. She was put in a reclining chair! In a lot of pain and not knowing what was going on she became distressed. I am used to these chairs as they are the type I have my treatment in, so I showed her how to adjust it so it became just like a bed and she was a bit more comfortable then. 

Saturday, 8 May 2021

Stiff Person Syndrome, is There a Cause?

 I'm not a doctor and can only write from my own experience and the experiences I've collected from speaking to others. If you believe you have any kind of illness then please seek out help from a professional.

Stiff Person Syndrome: a summary

With Stiff Person Syndrome being an incredibly rare condition, it's difficult to get any information. A good place to start is the official Stiff Person Syndrome website for the UK. Even though Stiff Person Syndrome was first discovered in the 1950s there is still very little research and many doctors will have not even heard of it. On average, it takes about 7 years to get a diagnosis. They diagnosed me in just one year as my consultant was familiar with the condition and knew what to look for.

Stiff Person Syndrome (I'll call it SPS from now on) is an auto-immune, neurological condition. Medically it is diagnosed by a mixture of symptoms, nerve and muscle control and anti-bodies. The main rogue anti bodies being GAD and Glycine Receptor. To get to a diagnosis a person might have to endure blood tests, a lumber puncture, nerve conductive tests, and electro magnetic muscle tests. 

There are many treatments, mostly drug based. A lot of patients can get good results from steroids, plasma exchange or immunoglobulins. Some can live fairly normal lives, some will be disabled for life.

The Causes of Stiff Person Syndrome

Now, a doctor will argue that nothing causes SPS, it mainly just appears. The anti-bodies are a major factor. 
If you talk to people who have SPS you will probably see some sort of pattern emerge. So many claim to have undergone some kind of trauma before the onset of SPS. 

Maybe the trauma triggered the SPS, or that the SPS was already there and triggered the trauma. Some people had falls because of unexplained stiffness. Now, because we know that SPS causes stiffness in muscles so it's quite possible that before diagnosis you can experience symptoms which cause falls. And if you ask an SPS sufferer, you will know that any kind of mental trauma will cause their symptoms to get worse. A shock, stress, grief or even something as simple as a sudden noise or change in temperature can cause symptoms and spasms. 

In my case, I'd experienced a few symptoms of pins and needles and numbness, which may have been an indication that something was happening inside my body. But I'd not really thought about it. Then I fell down the stairs. I can't explain what happened. I was almost at the bottom when I just slipped and landed on my back. I hurt my wrist where I'd put it down to break my fall, but my lower back was most affected. I'd also noticed that my neck was stiff and I couldn't move it without pain. I didn't seek medical help, I went shopping at the local supermarket the next day. It hurt, but I carried on.

Seven months later I was taking my Father-in-law to hospital. I was the only driver in the family at the time, and I had to take him for a scan as he was having chest pains. He was really ill in the car, and I was terrified that he was going to have a heart attack in the seat beside me while I was driving. We got to the hospital, but he died in the foyer. I still find the experience difficult to talk about. The following few hours were extremely traumatic. 

Three days later I was in the hospital myself suffering from what I now recognise as my first SPS attack. I had a full body spasm which left me paralysed and I was in hospital for two weeks while I was treated and re-habilitated. My MRI showed lesions on my spine at my lower back (T10) and my neck (C3) The places that I'd hurt in the fall down the stairs.

I really think there may be some correlation between the fall down the stairs which started the damage to my spine and maybe triggered the anti-body reaction, then the trauma of my Father-in-law's death that caused my SPS. But as I said, I'm not a doctor. 

Asking Others

After talking to other people who have SPS it's quite common for bigger attacks of SPS or even the start of SPS to arrive shortly after a traumatic event, either mentally or physically. Some people experience sudden stiffness which cause accidents which probably means the SPS is already there. But other's claim they had no symptoms until their trauma. 

Here are a few real life stories of the onset of SPS.

" I had a very stressful job and was full of anxiety before my diagnosis"
" My husband passed away, then I was hospitalised with pneumonia"
"My father died in a tragic accident"
" I was crushed by my partner while doing yoga"
" I had a fall skiing but also flu shortly after childbirth and already had auto-immune conditions"
" my car hit a telephone pole and I hurt my neck, I also had a stressful job"
" I had a stressful career and my Mum died of cancer"
" I had a stressful job, my Mum and Dad had dementia, my daughter got ill"

It really seems to me that these anti-bodies that cause us so much pain and suffering are triggered by pain and suffering. The irony is depressing. 

What Is the Answer

Well, thankfully, SPS is very rare but I think people should definitely take better care of both their physical and mental health. We need to learn to recognise when we are burning ourselves out. My life was really stressful in the year or so leading up to my problems occurring, then the fall and the trauma probably just added to it. Not everyone who suffers from stress or has an accident will get SPS, but there seems to be some correlation. Not everyone with SPS has suffered from an accident or trauma, so it's not a definite cause either. 

There is no cure for SPS but some people can manage to get their symptoms under control with treatments and medication. I've tried most things now, with little success. My doctor was on the verge of going down the psychosomatic route before he found a new lesion on my brain. But even if it was/is psychosomatic, the pain and suffering is very real and it ruins your life. 

I have yet to persuade my doctor to try Rituximab but I will persist as it's the only drug I haven't tried yet. He told me that IVIG was better but I have heard different stories from other people. The other treatment is Stem Cell Therapy, which I am not really pursuing. For one, I don't think I'd be approved, and I'd end up having to spend a lot of money that I don't really have for treatment privately. Secondly, it's a very invasive treatment with months of recovery, which is great if it works, but it's not guaranteed. I know of only one person with my condition who has had the treatment, and it didn't work. 

In conclusion, if trauma and stress makes SPS worse, maybe the answer is to seek a life without either. I'm determined to change my mindset, eat healthier, exercise within my limits, keep my brain active, and supplement my medication with alternative therapies. (although, I have heard that physical alternative therapies like acupuncture, reflexology, cupping, massage, etc. can have adverse affects, so I will avoid them. 

I already know and practice self Reiki, and now I am learning to incorporate this with crystal therapy. I try to spend some time each day just doing the things I enjoy and help to take my mind off my problems. I journal, use mindful writing prompts, work on my mental health all the time. I have learned to eat better and to avoid the things that make me feel worse. I really want a better quality of life and lying around being drugged up is not the answer to my problems. 

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Sunday, 28 February 2021

Rare Disease Day 2021

 After a year of misery and confinement we can finally see the light at the end of the tunnel. Do we go towards it? We will, but with trepidation. 

I have had my first vaccination, so has my husband and carer and our eldest daughter who works for the NHS. We are now feeling a little more safe, although we know that we could still get sick. 

If you have a rare disease or condition, then you are even more at risk from the pandemic currently swarming our world. As someone who has a poor auto-immune system I don't know how my body would react to the Covid virus. It was a small anti-body that set my immune system into overdrive and caused all my problems in the first place. It has a name, the anti glycine receptor anti body. Because of that one little anomaly my body decided to attack itself and now I'm left in constant pain and wheelchair bound when outside my home. 

My daughter has a less rare condition, Elhers Danlos Syndrome. But she doesn't have the classic version and we are not really 100% sure what she has. She has been diagnosed with a Marfanoid Body Shape, but so far no other indications that come with Marfan Syndrome. Although they will be keeping an eye on her as there can be complications as she gets older. She also has a rare form of psoriasis, which is not responding to treatment. She has slight scoliosis but not bad enough for surgery. She also has Autism, which I believe actually helps her to deal with all her other issues. I can imagine that life would be very different if she was a typical teenager. 

So as people rush towards the freedom being offered, whether they take the vaccination or not is up to them. No one can force someone to put things into their body that they don't want. Some of us don't have a choice. And we need to stay away, and keep safe for longer because our risks are so much higher. We should all be thoughtful of others as well as ourselves. 

Today, Feb 28th 2021, is Rare Disease Day.

Saturday, 23 January 2021

Stuck to the Kitchen Cupboard Like a Magnet

 I have spasms a lot, I had one in the hospital while having my IVIG a couple of weeks ago. Thankfully, the nurse knew what to do and slowly massaged me back into feeling again. Today, I had a spasm which glued my forehead to the kitchen cupboard. Ha, it sounds funny, it looked funny, but it isn't really funny for me.

I knew I had a spasm coming, I get warning signs, dizziness, tingling, even a weird feeling in the pit of my stomach. Over the years, I've learned to interpret these as warning signs. I should sit down, rest, try and stop the attack with mindfulness. It sometimes works. I had no warning at the hospital because I'd fallen asleep and woken up in spasm, these cant be prevented unfortunately. 

Today's spasm hit while I was cooking lunch. I'd managed to do lunch for everyone and was about to make my own when suddenly the pain in my legs became too intense and I just couldn't hold myself up. I didn't want to fall so I leant against the cupboard, my forehead was resting against the door. But then then spasm hit and I couldn't move. I couldn't lift my head from the door, when I tried it moved slightly and then went straight back like it was pulled by a magnet. I had no control over the rest of my body and my head was holding me up by being stuck to the cupboard. How weird it felt, and looked. Luckily there was family around an my wheelchair fetched. My husband, Graham, had issues trying to get me off the cupboard, my head didn't want to move. My body fell back into the chair, but then he couldn't get my legs to bend onto the foot rests. I was stiff and unbendable. I guess that's why it's called stiff person syndrome. The stiffness is very real. One day, it won't go away. one day it will spread to my organs and they will become stiff and stop working. That day can just wait, I'm not ready yet. 

Trust me, there have been times when I've wanted to bang my head against the kitchen cupboard. But it's not the same when it's not a conscious decision and my body just wants to do it for me. Losing control of your body is a scary experience. I don't think I will ever really get used to it. 

Then there is the pain. I can't even begin to explain how it feels but it hurts.

I need to get my brain to connect with the rest of my body again and the best way to do that is to move. But I can't move so I need someone to move me. This is not easy for me or for the person trying to move me, but it has to be done. Eventually, my brain reconnects and I'm able to move again. I'm left exhausted and in pain. 

This is such a strange condition, with strange symptoms. Even stranger is that because it's so rare it's hard to find someone who feels the same. Yes, we may share some symptoms but everyone seems to be different. I woudln't wish this condition on my worst enemy. I'm so grateful that it's not genetic and I won't be passing it on to my family. 

Wednesday, 9 December 2020

Could it be A sign of IBD?

 Last week I took L to see a new gastroentrologist at the Children's hospital. She's had gastro problems since birth and we've seen Drs and Nurses and tried all sorts of treatments with very little success. Now, she is getting older they seem to be taking her issues more seriously.

A few weeks ago we had a whole three weeks of an upset stomach, which in turn means an upset L and and an upset Mum. We were struggling and couldn't get it under control. I phoned the Dr and samples of blood and  feces were sent off for analysis.


Calprotectin has never been mentioned before, but there were moderate amounts found in L's samples. It helps to differentiate between Irritable Bowel Syndrome and Irritable Bowl Disease. The cut off point is generally 200, and the cause for worry is >250. L's was 248.
The Dr took another sample to check that to see if it was just a one off inflammation, or if it is still elevated. 

At 15, L is the right age to start showing signs of IBD so fingers crossed it's just an inflammation. 
Sadly, with the problems being long lasting, it probably is an indication that something isn't working as it should, and it never has. 


I was so pleased that we didn't come away with a dis-impaction plan. We had done so many of these over the years it really isn't pleasant and it has never worked anyway. But, the plan was a little different. L has been prescribed Loperamide to stop the diarrhoea and senna as a laxative. 

I was a bit stunned at first, why take two conflicting medications? But the answer is quite simple really. The Immodium will make the stools harder, but the senna will prevent constipation. The result should be  normal looking stools. It's been five days on this medication and we've had no success at all. In fact, not last night but the night before I was up at 1am with L while she was stuck on the toilet. 

 We will keep trying, she does seem to be getting more firmer stools. 
All I want for Christmas is a nice poo! 

First Gastroenterologist appointment at Adult hospital

 This is a brief update of Lucy's condition with her bowels so far which I wrote for her first visit to the gastroenterologist.  *******...