As some of you already know I was diagnosed with Crohn's disease earlier this year. It's been a bit of a whirlwind year, what with Covid and Crohn's, but although I have only just been diagnosed with Crohn's. My IBD team now believe I have had it since I was a child.
So what it Crohn's, Crohn's is an irritable bowel disease also know as IBD. Unlike it's sister disease Ulcerated Colitis, which can effect the large intestines, Crohn's can infect the whole digestive tracked. From your mouth, all the way down to your butt.
Crohn's is caused by what is effectively a faulty immune system. Our immune system is designed to protect our bodies from threats. However, for those of us with Crohn's, our immune systems have got a bit confused. Instead of attacking threats in our bodies, they have started to attack healthy tissue.
This can lead to inflammation, fistula's and strictures among other things.
My Crohn's is very severe. Probably due to it not being diagnosed earlier enough. So I have what they call Severe fistulated Crohn's.
This means that as well as inflammation I have holes in my intestines. One of which goes up into my abdomen.
My Crohn's needs some pretty serious medicine to keep it in check. And that is all they can currently do with Crohn's, try to manage it with medication, as there is currently no cure.
There are lots of different medications for Crohn's from tablets, through to injections that you can administer yourself at home, and regular infusions. I have infusions, and I have these every eight weeks, at the hospital.
An infusion is done, by inserting a canula and slowly over a couple of hours or so, pumping the medication into your system.
I am currently having Infliximab infusions at very high doses. Infliximab is a chemo drug. But is no longer used to treat Cancer. Us lucky Crohnies still get to have it though.
My Gastro doctor, also wants to add in a second Chemo drug, although this will be in much lower doses and I will take it daily in tablet form. This second drug is to try to stop my body developing antibodies that will stop the infliximab from working. Which it has already started to do.
The infusions are relatively painless, but you can have a lot of unpleasant side effects. Including hair loss, tiredness, nausea, rashes, chemical burns, dizziness and seizures, to name just a few.
I also have to wear a medical alert bracelet, so that if anything every happens and an ambulance is called, they can see what medication I am on, and know that I have a compromised immune system.
Because that is what the infliximab does, it stops the immune system working properly, so that it can no longer attack your body. But this means that you are at a greater risk of catching bugs and not being able to fight off infection.
Which means, we have to be very careful not to be around people who are sick, and to keep wounds clean. We also qualify for the Flu jab, every year.
Another option for managing Crohn's is surgery and a lot of people with Crohn's have had multiple surgeries. Some as many as 60 or 70 operations. This can't cure the Crohn's, but as my gastro doctor explained to me just the other day, it can remove the infected and thinned areas, and repair fistula's which then give them a clean slate to work from, when it comes to medication. Sadly, though this does not mean that you can come off the Chemo.
Some people do only have the infusions for a few years, and then go onto other medication. But for some, such as myself, their Crohn's is seen as too severe, and so that means, we will probably have to have Chemo, every 8 weeks for the rest of our life.
When you first start having infusions, they will be space closer together, these are know as the loading doses. They are done at what is know as week 0, week 2 and week 6. So that essentially means you will have your first one, then two weeks later your second, then six weeks later your 3 and then the 4 and all following ones, every 8 weeks.
There is one thing you learn quickly with Crohn's, however, and that is there are no set rules, everyone's Crohn's is different and so treatment and frequency of treatments can vary.
Now this is where it gets tricky. What are the symptoms of Crohn's? Well, it effects everyone differently. But stomach pain, diarrhea, constipation, weight loss, anemia and a general lack of energy are some of the more common symptoms.
People with Crohn's, also very rarely have just crohn's. It can cause all kinds of other health problems, including inflammatory arthritis, Ankylosing Spondylitis, Anemia, skin disorders, osteoporosis, gall bladder or liver disease, mouth and gum problems, and many more.
It is rare for people to die from Crohn's itself but they can die due to problems caused by Crohn's or the medication used to treat Crohn's and they can also die from other diseases that have been caused by the Crohn's.
So what has Crohn's done to me?
I have very limited mobility due to Crohn's, as I developed an illness that is connected to Crohn's called Ankylosing Spondylitis, this is inflammation around the lower spine and can lead to the spine fusing together over time.
I have receding gums and very few teeth left at the top of my mouth, only two molars either side, and all of the teeth on the bottom of my mouth are very loose and may overtime come out on their own. I have already had one do this.
I suffered from anxiety disorder for years although I am starting to get a handle on this now. Stomach problems that were misdiagnosed as IBS, Irritable bowel syndrome. Inflammatory arthritis, nerve damage that can cause me to suddenly twinge and throw things or let go of the things I am holding, and cause my hands to shake. Once my leg decided to twinge just as I was lifting up the other leg to take a step and I went crashing to the floor.
I've suffered from anaemia for years and looks like the walking dead, my son and husband used to joke that I was a vampire. I cannot deal with extreme temperatures either too hot or too cold, and I can feel freezing cold when it is boiling hot, or boiling hot when it is freezing cold, which is great fun. NOT!
I also have insomnia frequently get sores and rashes all over my body, my hair is falling out, my mouth, nose and throat and tear ducts are infected, and I have lots of canker sores in my mouth which means eating can be quite painful.
And something really gross. The skin on my tongue frequently peels off in great big strips. Lovely right.
In essence Crohn's is a horrible disease and if they are every going to find a cure, they are going to need people to donate. But sadly Crohn's isn't as well known or understood as say, cancer or heart disease, so it gets a bit neglected.
So if you would like a worthy cause to raise money for why not consider crohn's and colitus uk.
Well that's it from me, but if you have any questions, feel free to ask.
And remember to stay healthy, cause the alternative sucks.
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