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.

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. 

Treatment

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! 

A Day in the Life

 I've decided that I want to write things down for a couple of reasons. One is that I find it helpful to put it down to talk about it in a way that I can. The other is so that people can get some understanding about what it's like. Maybe there are other's who feel similar who can relate? Or maybe I can just let people know that living with a chronic illness is tough but not impossible. 

I am happy to answer questions. I'm happy to connect to others. I do not want sympathy or to be anything that I'm not. I am not brave, strong, amazing or any of those things. I am also not a whinger, complainer, attention seeker. 

If writing a blog is attention seeking then it's doing it in the right way. I want people to know what it's like and maybe help others.

Night Time

I have to go to bed as soon as I feel tired. If I leave it too long then getting upstairs can be difficult. I need to reserve that bit of extra energy to make the slog upstairs. I turned down a lift. I had plenty of time to think about it and I decided it wasn't the right thing for me. I didn't want to lose the space in my bedroom where it would have been installed. That may sound silly, but everyone needs a sanctuary, a place they feel safe and can go when things are tough. It's my bedroom and I didn't want a lift put in there. I would like a stair lift at some point, but for now I'm managing to get upstairs, mostly with upper body strength so I'm hoping I can hold on to that for a while longer. 

Once upstairs I change in the bathroom. It's warm and I can sit at the right height and angle to undress and change. The bedroom is cooler. I don't like the radiator on unless it's really cold, I prefer to snuggle in the duvet to keep warm. I sit on the bed to take my medication then using my remaining strength I pull my legs onto the bed and lie down. There is not much more I can do, I don't turn over, or move around to get comfortable. Where I lie is where I sleep. I have a bed guard that helps my top half from falling out of bed. I can use this to help pull me up when I need to get out of bed. 

Morning

I don't move in the night and this can cause me to become very stiff. Some days are not so bad and I can move okay, but on a bad day I can't move at all and need help to move my legs out of the bed. This is often done by my 10 year old son who is first up in the morning. He'll drag my legs out while I lift my upper body with the frame. He then sorts out my medication and gives it to me with my water. While in sitting position I start to regain feeling. Along with pain. 

When I'm ready I make my way downstairs. I have two bannisters to help me an rely on upper body. My legs are generally bad in the morning, even more so than at night. It takes a while to get going. 

My Day

I can move around during the day, once my medication has set in. I can make tea, breakfast, fold the washing. Somettimes I can fill up the washing machine or tumble dryer. I can tidy things and wipe down the kitchen work tops. I can wash up things in the sink. If I'm feeling good I may even be able to empty the dishwasher. 

I try to keep the bathrooms clean. I've invested in cleaners with long handles for those hard to reach places. I find bending extremely difficult, and stretching is difficult too. So, movement is hard but not impossible. 

If I bend or stretch too far the pain is incredible, It can happen anywhere that is affected, my back, my side, my legs, my arms, my neck...anywhere. But, I have to make sure I don't go that far. That sock at the back of the tumble dryer will have to stay there. That toilet roll that has dropped behind the toilet isn't going to be moved by me. Sometimes, even picking things up off the floor is just too much. 

I feel and act stiff, because that is what my body wants. I walk funny, it's hard to explain, but I feel like I'm walking through treacle and I look like I'm walking after two bottles of gin. I wobble and lose my balance. I'm good at not falling in the home because I know wherever I go I have something to help me. If there are things or people in the way it's much harder. The way has to be clear of obstruction. I find it harder to walk in unfamiliar places, even with aids. My brain is trying to concentrate more on the new situation that the simple act of walking. That's part of my condition, my brain doesn't communicate properly with my body. I can still do things, but it either has to be something completely natural to me, or I need to think really carefully. 

It's hard to explain. I can pick up the remote and turn over, but if someone asks me to pass the remote, then I find it so difficult to process the request and the action. It's very frustrating. 

I'm happier at home. If I go out I need my wheelchair. But that's a whole different day. My normal day involves a little housework, a lot of sitting down on the settee, a bit of reading, crochet or tv watching to pass the time. I also manage some cooking, but lately I'm finding it difficult to stand in the kitchen for very long. I have a kitchen stool, but it's only good if I don't have to move. I can sit and chop vegetable for ages, but getting up and putting them in a pan or on the oven involves a lot of effort, getting up from my chair and sitting down again is just another job for my body to do. The chair is good, only if I don't have to move! 

When the pain hits bad I can do nothing but lie on the settee, or flop in awkward positions that my family do their best to make better for me. When the pain gets too much my body gives up completely and I can't move. Sometimes at all. Even my mouth so I can't speak. I hate what my family has to go through and I'm glad the younger ones leave the room. Generally, some pain relief and a nap brings me back again. It doesn't happen every day. But when my treatment wears off it happens more frequently. I get warning signs that it's going to happen so I try to be careful and not push. 

Other times I get frustrated and push myself just to see if I can avoid it. I fight it, but I rarely win. In fact, I don't think I have ever won. 

It's My Life

I've accepted my life now. I would give anything to be fit and healthy again and will never give up hope of a cure. But for now, I've accepted my limitations, I suffer my frustrations but most of all I really feel for my family. That's why I keep fighting, for them! I'll keep going, and pushing and doing what I can because that's the way I am. 

Anyway, lying in bed all day being waited on hand and foot doesn't really appeal to me.... (mmm, maybe) 

Welcome to my story, can you relate? Do you want to chat? Feel free to comment if you do. 

I suffer from a rare neurological disorder called Stiff Person Syndrome. It came on quite suddenly, although, with hindsight I can see I had warnings that something was wrong. I hospitalised on 1st |Jan 2016 and kept in for two weeks. They found lesions (inflammation) on my spine which they put down to Transverse Myelitis. When I didn't recover they found a rogue anti body called a glycine receptor in my blood. I was then diagnosed with Stiff Person Syndrome plus Progressive Encephalomyelitis With Rigidity and Myoclonus in January 2017. 

https://rarediseases.info.nih.gov/diseases/5023/stiff-person-syndrome

https://lizblows.wixsite.com/spsuk

https://lizblows.wixsite.com/spsuk/map

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3146306/

When Chronic Illness becomes a way of life

 I was fine, yes, I had my regular aches and pains. I'd been a chronic migraine sufferer for years but they were definitely related to my hormones. I'd also had some massive stomach pains that were being invesitgated when I got sick. Nothing was really found but they did say that I had a leaky gut, gasses were escaping into other parts of my body, including my womb. These days I imagine my womb as a shrivelled up prune! She served me well giving me five children. It was tough going at times but she's retired now, and so have the hormones. 

Chronic Illness and Life

So, even though I'd suffered on and off for many years, it wasn't until I began suffering constantly that life really changed. When I say constantly, I mean, constantly. There is not a moment of any day that I do not feel pain. I sleep a fair bit because I have pills that knock me out, but wake me up and the pain is still there. Day and night, night and day, every single minute.

I think this is what is so difficult to understand for most people. We all get sick, right? That throbbing migraine that has you lying down in a darkened room thinking that you just can't carry on is the bane of your life. But you know that it will go away. You will be okay. The pain will go and you will function again. phew. 

You get a cold and your head throbs, your nose runs, you can't stop sneezing. You cough and cough and it stops you sleeping. You sweat and ache and feel like hell. But it passes. A few days later you can be jumping in the car or on the bus and off to the shops, or to visit friends. (Well, maybe not in lockdown, but in normal times.) 

Can you imagine not getting better? 

It's hard isn't it.

I Was Told I Would Get Better

When I was in hospital I was told that I would get better. It would be hard work and take time but I could expect to be back to normal in about 8 weeks. I cried, 8 weeks was a long time to feel so rough. I felt sorry for myself. I did everything they asked. I took my medication, I did my physio, I pushed myself as much as I could. I even ate salt because my blood pressure was so low. I hate salt unless it's hidden in a cake or bread. I never usually add it to my food. 

I came home and carried on with the pills and physio. I visited hospital weekly. I tried so hard and waited to get better. I didn't get better. 

I improved. I managed to learn to walk again and move a little more. Although I still have plenty of times when I lose control of my body, mostly I can do stuff even if it hurts. 

The hurting never stops though. I get pain in my feet, my legs, my hips, my sides, my stomach, my chest, my shoulders, my neck, my arms, my fingers, my face, my head. Okay, Okay. I should have just said everywhere. Yup, even my bottom hurts. It's been nearly five years now, every day. 

It never, ever stops hurting.

Sometimes it doesn't hurt so bad and I can walk to the toilet or the kitchen without wincing every second. I can sit and type, or crochet and watch television. It hurts but I'm taking my mind off the pain. I can stand in the kitchen, and sometimes I can get so involved in what I'm doing I push through the pain and get on with it. I can go out in my wheelchair, every bump hurts, every sudden stop or turn can hurt, but I need to get around don't I? 

Sometimes it gets worse. Generally when I've done any of the things above. You see, I want to do things, but doing things make the hurting worse. I could lie in bed all day, but lying in bed hurts too. Some nights I wake up and force myself to stand up and take a few steps just to relieve the pain of lying down. Then I have to lie down to relieve the pain of standing up and walking. 

When it gets really bad I take some more pills, generally diazepam because they help me relax. When the pain is bad, panicking makes it worse. I don't want to panic so I chill myself right down. I focus on breathing. I'm lucky, breathing doesn't hurt. I fill my chest and empty it. I concentrate on that. Everything else goes completely, utterly numb. My body's reaction to severe pain is to go numb. It sounds good, but it's pretty scary. When I say numb, I mean I cannot move. I have no control at all. I sometimes manage to keep one of my arms or my neck so I can move my head, but sometimes, I cannot even control my speech. 

Death Meditation

I came across death meditation in a fiction book I was reading. The description was exactly what my body does when I'm in extreme pain. My first reaction was to panic as it seems my body is preparing for death. But then I realised that each time I've come back from it, and I will come back from it. My breathing continues and I will continue to breathe. 

Death meditation is a Buddhist practice which teaches you to let go of life and accept death. Accept your fate, after all, we will all die one day. I've decided to learn more about it. I think letting go of life is difficult and people fight it so bad. I won't give up wanting to live, I have children I want to see grow up. But if it comes to the end I want to go in peace. knowing peace, feeling peace, and hopefully letting my family know that I am at peace.

A lot of people when faced with the prospect of constant pain for the rest of their lives find it difficult to accept. Trust me, I get that. I think that maybe I have at least 20 years left on this earth. That's 20 years of pain and suffering. You may say I'm being over dramatic, but that's because unless you experience pain every minute of every day it's hard to understand. People who can't accept it give up, it doesn't make them weak. Really, choosing forever peace over forever pain can seem like the perfect choice. 

I've chosen forever pain.

Of course, I'll never stop trying ways of easing the pain, making life better, living my life, creating, enjoying, laughing, loving, there are so many things you can do even if you are in pain. And all of them help to make the pain more bearable (Apart from laughing, if I laugh I get the most incredible pain spasms in my side. But, it's not going to stop me from laughing.)

Accepting My Fate

I have accepted that I am now constantly disabled and that I am not going to get better. My original diagnosis was wrong and now I know that my condition is progressive and will get worse. But that's okay, because I can keep going. I will keep looking for the things that make me feel better, happier. I will carry on because I never want to give up. I'm not fighting, it's not a battle, it's my life and I just want to live it. 

I may hurt but I won't give up smiling and loving my gorgeous family. 

It's Been a Long Time!

 So, I've not written here in ages. I guess I wanted to keep L's life a little more private as she got older. But we are still on a long journey with her health and I think it needs a place to be recorded. 

I have also decided that this would be a good place to write about my own chronic illness. It's a difficult time right now and people are always looking for connections and help.

I don't know if I can help anyone, but I do want to share my story and if you can relate to any part then please feel free to get in touch to talk about it. 

As I've not written here in a long time I will start with a recap. I'll try and keep it brief, but it's not a short story.

First up, L's Story

From the very beginning I knew something wasn't right with my girl. She seemed to be in pain all the time. Of course, Drs said it was colic and such like, and nothing to worry about.

She developed normally, apart from her toilet problems. We tried everything, even to the point of painting the bathroom girly pink and buying a Princess toilet seat. But she just couldn't 'go'

She started nursery at 3 and was 'suspended' until we could toilet train her, when her teacher noticed I'd sent her to school in a 'pull-up' nappy rather than pants. Roll on 12 years later and she still wears pads and incontinence pads. 

I asked for help from an early age and to be fair we have seen a paediatric gastric doctor who first told us she had problems, then back tracked by saying he'd found nothing. We confronted him but he denied ever saying anything and refused to do the tests again. This is not uncommon. It's happened to me too. 

We did get a referral to a continence nurse who was really helpful. She explained how everything worked. shared videos that were child friendly so L could understand. Then told us it was constipation and that L needed a dis-impaction.

Dis-Impaction

This needs a paragraph to itself. To dis-impact a bowel you have to empty it of everything. That means taking a solution (Movicol) that pushes everything out. Laxitives can be used if it takes too long, but it generally takes about 4 days. With L, it took 9 days. I want to tell you about the mess, but I'll leave it to your imagination. That's when the 'poo bucket' was introduced in our home. It's a nappy bucket that gets filled with soiled clothes so I can wash them seperately. I have to wash them by hand at first, generally down the toilet, then in the bathroom sink. Then a double wash in the machine. Then the washing machine gets a drum wash. This is a weekly, or bi-weekly task and it's the bane of my life. 

So, we dis-impacted. To the point of water like poo and no lumps. Then L became constipated again less than a week later. The nurse said this was common and we had to dis-impact again. We went around this cycle for FOUR YEARS! No further help was ever offered so we stopped going to see the nurse. 

We still dis-impact occasionally. She gets constipated again straight away. 

But L is More than Poo!

L's pooing problem is now being taken seriously by the Drs but I think I need to follow that story seperately. Let me just say for now, that things got really, really bad this year. 

L was in pain as a baby, I wasn't imagining it. We have a diagnosis, but it's being questioned as her genetic dr seems to disagree. She has Elher's Danlos Syndrome. A connective tissue disorder which means her joints can pop out of place easily. She's seen a rheumatologist who gave this diagnosis. She has also had physio therapy  (which made her worse) and then she was referred to a geneticist. She believes that L has Marfan Syndrome, but she's currently carrying out more investigations. Next month L's siblings are going for blood tests to see if the genes are in the family. (sadly, the signs are there but the other two have not suffered so much.)

When L was seven years old her neck became stuck in an awkward and painful position. I have the full story recorded here on the blog, but it resulted in 18 months of treatment including five trips to the operating theatre and two sessions of halo vest wearing. 

When L was six years old she was diagnosed with high functioning autism. She has managed to go through mainstream school and is currently working on her GCSEs. She gets a lot of help at school which I am truly grateful for. 

I will tell you how L gets on from now on. Especially as some of her current testing came up with some issues which involve further hospital intervention.

My Story

I too am a zebra, but it happened suddenly for me. I fell ill on 1st January 2016 and ended up in hospital for two weeks. I was diagnosed with Transverse myelitis as I had lesions (Swellings) on my spine at C4 and T10. The Doctor in the hospital told me this after my MRI. My notes do not say this. The Dr I see now has no record of this ever being said. I'd think I was going crazy but I was not alone when the original Doctor told me this, I have a witness. (I've never had another full body MRI) Only brain ones.

A year later they found some rogue anti-bodies in my blood and I was diagnosed with Stiff Person Syndrome with PERM. It's a rare condition affecting less than 1 in a million world wide. Most doctors have never heard of it. 

This is getting long so I'll fill you in as briefly as I can. Stiff Person Syndrome does was it says, it makes me stiff, I can't bend or stretch without pain. I have a spastic gait which stops me from being able to walk normally, so I use a wheelchair. I have spasms where my body goes suddenly stiff and immobile. or just immobile and I can't control it. 

The PERM is Progressive Encephalomyelitis with Rigidity and myoclonus - Progressive - it will get worse, encephalomyelitis - a demyelinating of the spinal cord (damage to the coating), rigidity - stiffness and myoclonus - uncontrollable jerking. (sounds fun doesn't it!)

I have also recently had a scare when my brain started bleeding for no reason and caused a lump to appear. Thankfully, this has now been re-absorbed, but there is no guarantee that it won't happen again. 

Mum and Daughter

So, to conclude. I am a disabled Mum looking after a disabled daughter. My youngest son is also on the autistic spectrum and has health issues, but we don't have any serious worries about him. 

We have a lot to face and although I stopped writing about L a couple of years ago, I do think her story needs to be continued. This will also give me the opportunity to connect with other chronic illness sufferers. 

Please feel free to browse L's story so far. Particularly if you are interested in halo wearing. It's quite an experience and not one you want to face alone.