Imagine waking up and after going to the toilet you find blood. I'm not talking about the "shit I've got my period" blood, but the "shit I think something might be wrong" blood. You find yourself running to the toilet more often with painful bloating.
before diagnosis (before pred)
Then imagine that you wake up and find that your left knee is throbbing intensely, it feels like someone is hitting your knee with an industrial hammer and the bone in your knee has broken into a million pieces. You can barely walk but you probably just pulled a muscle and it will pass by morning. You wake up the next morning to find that the pain has travelled to your right elbow, but it's not just your right elbow that is throbbing; it's also your left wrist, right ankle and now your left knee as well. You can't walk, you can't feed yourself and you need someone to look after you.
Painful, red, swollen and hot to the touch.
Painful, red, swollen and hot to the touch.
That is what it is like to live with Ulcerative Colitis with associated arthritis in your joints.
What is a chronic illness?
This is quite personal for me to post on here, but I'm hoping this may help some of you to understand what your friends, or people you may know who are going through something similar.
Before I talk about my story, I want to write this blog post assuming this is all new information, which it may be for some of you, so I'm going to give you guys some understanding of what a chronic illness is and what ulcerative colitis is. I apologise if I don't explain myself well enough! (If you want to know about my journey, feel free to skip this)
What is a chronic illness?
A chronic illness is a health condition that is long lasting and with persisting effects, now it can be anything minor such as short sightedness to something that is more debilitating, like arthritis. A chronic illness a lot the time doesn't usually have a cure and is, what the word chronic suggests, a life-long condition.
What is Ulcerative Colitis?
Ulcerative Colitis is a little trickier to explain, as this chronic illness is so complex and different for everyone. The most text book definition of U.C is where you have inflammation in your bowel (ulcers in your digestive track) which can cause multiple side effects and discomfort, the most common being bleeding and irregular bowel movements. We are yet to know what is the cause behind Ulcerative Colitis is and at the moment, it's not curable so I have to take daily medications to help ease my symptoms. There isn't enough evidence to suggest that U.C is diet based, although I do have my trigger foods that make living with this condition a lot harder, which can send me into a flare.
Ulcerative Colitis is also known as the invisible disease, an invisible disability, this is definitely something you should keep in mind when you see someone without crutches or a wheelchair parking in a disabled bay or using a disabled toilet. Take this post as an opportunity to educate yourself, not all disabilities are physical, not all fights and struggles can be seen, don't allow ignorance to make a wrong judgement. I'm sure I can speak for not only myself, but others when I have received dirty looks from entering a disabled toilet or parking in a disabled bay.
What is Ulcerative Colitis?
Ulcerative Colitis is a little trickier to explain, as this chronic illness is so complex and different for everyone. The most text book definition of U.C is where you have inflammation in your bowel (ulcers in your digestive track) which can cause multiple side effects and discomfort, the most common being bleeding and irregular bowel movements. We are yet to know what is the cause behind Ulcerative Colitis is and at the moment, it's not curable so I have to take daily medications to help ease my symptoms. There isn't enough evidence to suggest that U.C is diet based, although I do have my trigger foods that make living with this condition a lot harder, which can send me into a flare.
Ulcerative Colitis is also known as the invisible disease, an invisible disability, this is definitely something you should keep in mind when you see someone without crutches or a wheelchair parking in a disabled bay or using a disabled toilet. Take this post as an opportunity to educate yourself, not all disabilities are physical, not all fights and struggles can be seen, don't allow ignorance to make a wrong judgement. I'm sure I can speak for not only myself, but others when I have received dirty looks from entering a disabled toilet or parking in a disabled bay.
November 2016, both hands are swollen (left is worse) which led me to going into hospital
I couldn't shower, eat, get up, go to the toilet by myself and my parents had to help me.
My Journey so far...
It's 2014.
My first year out of high school.
My first year starting uni.
My first year starting a new chapter of my life, entering adulthood and learning about the kind of person I am going to be.
I remember just being so hopeful and excited, but unfortunately none of it worked out the way I hoped it would.
I remember getting symptoms about 2 weeks after I had gotten back from America, my joints were sore and I just assumed that I had pulled a muscle or slept weirdly. I honest to god wish that was the case. It was about 3 months before I was diagnosed and before I found myself in hospital, unable to move, unable to walk, unable to feed, shower or go to the toilet by myself. I was completely paralysed with pain and it wasn't until I had a colonoscopy that they discovered that I had Ulcerative Colitis on the left side of my bowel with enteropathic arthritis. I was put on various medications including steroids to help reduce the inflammation of my joints and I was sent on my way to try and get some normalcy back into my life.
Bowel wise I'm usually okay, which can stump my specialists and doctors as if my bowel is healthy, why am I having such a severe joint reaction? My inflammatory markers would be low, yet my ankle would be the size of Jupiter. My team includes a rheumatologist, gastroenterologist, phsyio, pain psychologist and GP.
Bowel wise I'm usually okay, which can stump my specialists and doctors as if my bowel is healthy, why am I having such a severe joint reaction? My inflammatory markers would be low, yet my ankle would be the size of Jupiter. My team includes a rheumatologist, gastroenterologist, phsyio, pain psychologist and GP.
I was put on prednisolone (a type of steroid) that caused weight gain, moon face (added roundness of the face) hot flushes, insomnia, power munchies, acne, etc just to name a few side effects. I was also put on Methotrexate (a type of chemotherapy) which is cytotoxic to the touch, so when I take the tablets I have to wear gloves and make sure it doesn't come in contact with my skin... scary right? and yet I am putting this into my body.
after diagnosis (during/after pred) moon face and weight gain
Hey, that doesn't sound too bad right? I was in remission for a year and everything was fine.
Sadly I was mistaken, the worst was far from over.
After a year of being in remission I had another flare of my bowel and joints (April 2015), which caused me to be put back on prednisolone (between 10-40mg a day) and for the next two years I had trialled different types of biological drugs like remicade, (an infusion that costs $30,000 a year that was thankfully covered by medicare) humira, (a fortnightly injection in my stomach that costs around $30,000 a year, which was again, thankfully covered by medicare) which unfortunately, neither biological drug worked. I would be in and out of hospital and during all of this, my crystal clear skin started getting acne, my slim figure started getting rounder and rounder with the weight gain (I've gained a lot of weight) and my overall positive outlook started to diminish.
Worst Year Yet: 2016
9 Hospital admissions
2 Emergency Med Alerts
My medication doubled
Rheumatologists basically said they had failed me and that there was nothing more I could do, but you BET your girl proved them wrong.
50-55 kgs, 1-2 months before diagnosis 2014
70-80kgs after diagnosis Dec 2016 (I don't like taking many pictures of myself for obvious reasons)
Worst Year Yet: 2016
9 Hospital admissions
2 Emergency Med Alerts
My medication doubled
Rheumatologists basically said they had failed me and that there was nothing more I could do, but you BET your girl proved them wrong.
2016 was the year that my condition has been the worst it has been. In total I had 9 hospital admission over the year and spent close to 4-5 months in Fiona Stanley. In May I discovered that I couldn't walk for more than 5-10 minutes without getting severe back pain which caused me to sit down and to rely on crutches (which is something I am still dealing with). I had trialled Humira for 3 months which did not work and slowly my hope was getting lower and lower as when all odds are against you, its hard to be hopeful and positive but I REFUSED to believe that I wouldn't get better. I kept fighting.
June 2016 - January 2017
This is the part of the blog post I've kind of dreaded talking about, typing this sentence, I'm already tearing up as this was by far the most traumatic and the most painful experience in my life. The whole month of June my knees and ankles were swollen and I was basically bed ridden for the month and needed assistance with showering and going to the toilet. I was in denial, I refused to go to hospital until... yes... you guessed it...
October 2016
June 2016 - January 2017
This is the part of the blog post I've kind of dreaded talking about, typing this sentence, I'm already tearing up as this was by far the most traumatic and the most painful experience in my life. The whole month of June my knees and ankles were swollen and I was basically bed ridden for the month and needed assistance with showering and going to the toilet. I was in denial, I refused to go to hospital until... yes... you guessed it...
- until the oxycodone stopped working
- until the panadeine forte stopped working
- until the tapentadol stopped working
- until the lyrica stopped working
I was at my wits end, constantly crying, being unable to sleep and barely getting through 4 hours of pain relief. We contacted my rheumtologist only to be told that as it is flu season, the hospital is packed and there are no rooms available to me, so, we waited. Every day she would call and update us on the situation at the hospital, until the 7th day where she said "Come into the rheumatology clinic and we will examine your knee and decide whether or not we will admit you".
25th of July - 29th of September
I was admitted lol.
The only issue was any pain relief they were giving me, nothing was working, so much so that I got high from the various pain killers but I wasn't getting any of the sweet relief I should have been receiving. Nurses and doctors were stumped, until they realised that because I had waited so long before coming into hospital, my pain was harder to control. They decided the next day to do a steroid injection in my knee and I had about 6 hours to prepare myself. They didn't put any numbing cream on me, injected the anesthetics which felt like I was getting stung by a bee, and then proceeded to pull liquid out of my knee .(which they were unable to get any liquid) Which honestly, was one of the worst pains I have ever experienced. After they were unsuccessful trying to get liquid out of my knee, they proceeded to inject the steroid.
I was expecting to see improvements within a few days and expected to be home within a week, but I spent 67 days in hospital (around 2 and a half months). 2 weeks have passed, and my knee hadn't improved in the slightest. Panic starts to set in as I am screaming in pain, every night I would be wide awake due to the severe pain I was in and my rheumatology team decided to have a second attempt at getting fluid out of my knee and trying to reduce inflammation. I remember seeing my parents crying because I was screaming for relief, praying that I could sleep and wake up feeling okay, but unfortunately for me I had to keep fighting just a little while longer. I wish I could have taken their fear and pain away, and while this was all happening I felt extremely guilty because I couldn't control what was happening to me. It was affecting those closest to me in a very difficult way and that was very hard for me to accept.
As you can tell from the caption above, the injection started to work and I was working with a physio who helped increase my movement as all of my specialists have said "movement is GOOD for your joints". My specialists wanted to send me home, my gut was telling me this was a bad idea as I still had issues with pain control. Yet much to my dismay, the specialists sent me home. The same day I was home, that evening my shoulder started to throb and ache, and this was how my anxiety started to rise as I have NEVER had a swollen/inflammed shoulder before. I dismissed it and went to sleep, the next morning my whole left arm was aching with severe pain and I was on so many pain killers that we had to keep a diary. The following day, my whole body had flared, left arm, right arm, both knees and ankles and I was paralysed with pain. My physio visited me at home and said
"why are you home? You need to be in hospital" so we contacted my rheumatologists and they said for me to get back to the hospital as soon as possible.
Due to me being unable to move because of the severe pain, we had to call an ambulance to help me get back to the hospital. I was in so much pain that the paramedics had to carry me onto a stretcher. I was panicking, stressed and wondering what was wrong with me. Wondering why this kept happening to me. Emotionally, I have never been so low before, I spent majority of my days crying, asking for answers and yet receiving nothing. They pumped me with steroids to reduce the inflammation and yet nothing happened, I was seeing a psychologist to try and control the depression and anxiety I was going through which then led me to seeing a psychiatrist but I refused to take anxiety meds, I refused anti depressions because all I wanted was answers, it was NORMAL for me to be going through the emotional rollercoaster I was on.
I stopped replying to messages.
I truly believed I would never get better.
I truly believed I was never going to be able to go home.
I started to accept that this was the life I was going to be living, filled with pain and having questions that would never be answered.
While this was all happening, my other knee started to flare and I had to have a THIRD injection, we were able to get about 3ml of fluid out but the recovery was difficult. I had severe pain in my left knee for over 2 weeks, this was the most painful injection I have ever had. When I had the injection, it felt as if the needle had gone through my muscle and I wouldn't wish this kind of pain upon anyone. I was on drugs like ketamine, tapentadol, lyrica, tramadol, etc.
2 Med Emergency Alerts
First Med Alert
This is the part of the blog post that I'm really worried about talking about, as I had 2 emergency situations in the hospital that were very close to going down a very dangerous route. I started coming down with a temperature and nothing was keeping it down and of course during this, my pain was very severe. Due to how high my temperature was, my nurse was in my room the entire time trying to get it down and checking it regularly. My nurse decided to check my heart rate and blood pressure...
Hold on
Pause.
The average heart rate is between 60-100 bpm.
My heart rate went up to 180 bpm.
Next thing I know my nurse has pressed a button and an alarm went off. My mum was ushered out of the room and weren't allowed to come back in and I was surrounded by about 8-10 nurses hooking me up to a heart monitor, asking me questions about my pain and temperature. I was in such a panic because I could see my heart rate increasing which made me panic more. Thankfully, one of the nurses turned the monitor around so I couldn't see it. A doctor came into the room and put a cannula in my arm asking me questions while other nurses hooked me up to different machines. I remember seeing them bring in a defibrillator that was put next to me and was within reach if they needed to use it. I never thought anything like this could happen to me.
I could hear my mum speaking to my dad on the phone outside saying "They won't let me in, they won't let me see her, I don't know whats going on, I don't know if shes going to be okay"and thankfully one of the doctor's heard her and let her in to see me. The main doctor who was setting up my cannula hooked me up to a pain relief machine and all I would have to do is press a button and it would release pain relief every 5 minutes. Finally, I started feeling some relief and slowly my heart rate and temperature came down.
i just remember seeing my mum break down crying, which made me cry because I hated putting her through that. I hated the fact that for a moment, she thought of the worst case scenario.
This was one of the most traumatic experiences for me, and it's still something I am trying to move on from. I thought and prayed that I would never go through that again, and yet, I did.
Second Med Alert
The same thing happened the following night, yet they realised I had serotonin syndrome which they thought could be the reason as to why my heart rate was so high and why I was having such severe pain. Yet there were still questions that had completely stumped my specialists;
Why is my pain so high when all of my tests are coming back negative?
Why am I getting discolouration of my swollen joints?
Why aren't the steroids working? What else could I do?
As this med alert happened, my mum and I didn't panic as much as we knew why it was happening and hoped they would be able to get it under control. They took me off half my pain relief and the following weeks were some of the hardest I had been through. My heart rate went up to 185bpm.
Important family meeting with all of my specialists and the rehab specialists
I then had a meeting with all of my specialists, trying to figure out a game plan for the next following weeks. We talked about me moving to the rehab clinic and the new treatment I was to go under.
I hadn't really had any improvement of my joints and was feeling hopeful for some positive answers from my specialist but I was met with possibly the worst thing you could want to hear.
"We failed you."
"I'm sorry, but we don't have the answers you are after."
"This is one of the most complex cases we have seen with your illness."
"We can only hope for the best, but I'm sorry, there is nothing more we can do for you"
"We can only wait and see if this new treatment works, but we have to be realistic about this"
This is probably the strongest I have EVER been. I didn't cry, I didn't show that I was disappointed, instead I asked;
"Well, what is the next step from here?"
The next step from here was Rehab. I was moved to the Rehab clinic and over the course of three weeks I was pushed physically, with hydrotherapy and gym sessions. I was seeing a new psychologist, I was working hard with my physio and O.T to try and get out of there. I was rewarded with day passes to go home and just have the smallest sense of normalcy.
Even though I was so grateful for the day passes, returning to the rehab clinic was so incredibly hard for me, I would cry every time my parents would leave after dropping me off and it was difficult for me because there was nothing more I wanted than to be home.
Slowly, I started to reduce the swelling and pain in my joints and started becoming more and more independent. My rheumatology team visited me and said,
"We never expected you to recover like this, we thought that being in a wheel chair and dealing with the pain was going to be your new normal"
I cannot tell you how good it feels to know I proved them wrong. I cannot tell you the amount of pride I felt because despite the odds, I did it.
I made it.
Eventually, I made it home and although I still had major joint issues and problems, I kept trying to fight back.
Aftermath
Recovering from one of the most traumatic events of my life was not an easy thing and is still something I am trying to overcome. Mentally, I have never been as anxious and depressed as I was. I was so happy to be home but never expected trying to overcome this would be as hard as it was. I added another specialist to my team, a pain psychologist who has helped me immensely.
It was hard opening snapchat and seeing my friends go out to dinner, go to concerts and go out clubbing which is something I wasn't able to do and made it very hard for me to accept my current situation.
I'm still not able to go clubbing or go to a concert, but slowly I am starting to socialise more and trying to move forward with my life. I now have full functionality of my joints and on a day to day basis, don't have any pain.
I still have a very long way to go, but I'm positive because despite the odds, I did it.
Despite the odds, I have been able to for the past 2 months live a normal and healthy life.
My specialists still aren't 100% sure if I have enteropathic arthritis and are thinking I may have psoriatic arthritis. I hope to one day have a definite diagnosis!
This was a very long blog post! Thank you if you are still with me. This was a very hard blog post for me to write and I wasn't able to go into as much detail as I would have liked to in fear of this blog post being too long. I would love to write more blog posts similar to this, and definitely plan on doing so in the future.
If you would like any information on Ulcerative Colitis, the website below has been very helpful and beneficial for me.
https://www.crohnsandcolitis.com.au/
I may have been in crazy amounts of pain, but I still had my sense of humour
Having faint veins and getting as many injections/cannulas as me isn't fun
25th of July - 29th of September
I was admitted lol.
The only issue was any pain relief they were giving me, nothing was working, so much so that I got high from the various pain killers but I wasn't getting any of the sweet relief I should have been receiving. Nurses and doctors were stumped, until they realised that because I had waited so long before coming into hospital, my pain was harder to control. They decided the next day to do a steroid injection in my knee and I had about 6 hours to prepare myself. They didn't put any numbing cream on me, injected the anesthetics which felt like I was getting stung by a bee, and then proceeded to pull liquid out of my knee .(which they were unable to get any liquid) Which honestly, was one of the worst pains I have ever experienced. After they were unsuccessful trying to get liquid out of my knee, they proceeded to inject the steroid.
Going in for a procedure at Fremantle hospital
I was expecting to see improvements within a few days and expected to be home within a week, but I spent 67 days in hospital (around 2 and a half months). 2 weeks have passed, and my knee hadn't improved in the slightest. Panic starts to set in as I am screaming in pain, every night I would be wide awake due to the severe pain I was in and my rheumatology team decided to have a second attempt at getting fluid out of my knee and trying to reduce inflammation. I remember seeing my parents crying because I was screaming for relief, praying that I could sleep and wake up feeling okay, but unfortunately for me I had to keep fighting just a little while longer. I wish I could have taken their fear and pain away, and while this was all happening I felt extremely guilty because I couldn't control what was happening to me. It was affecting those closest to me in a very difficult way and that was very hard for me to accept.
The injection was successful and I slowly started to gain movement and get better
"why are you home? You need to be in hospital" so we contacted my rheumatologists and they said for me to get back to the hospital as soon as possible.
The third day I had been home before an ambulance took me into hospital
My dad helping me take a snapchat as my heart rate had elevated and needed to be tracked
Due to me being unable to move because of the severe pain, we had to call an ambulance to help me get back to the hospital. I was in so much pain that the paramedics had to carry me onto a stretcher. I was panicking, stressed and wondering what was wrong with me. Wondering why this kept happening to me. Emotionally, I have never been so low before, I spent majority of my days crying, asking for answers and yet receiving nothing. They pumped me with steroids to reduce the inflammation and yet nothing happened, I was seeing a psychologist to try and control the depression and anxiety I was going through which then led me to seeing a psychiatrist but I refused to take anxiety meds, I refused anti depressions because all I wanted was answers, it was NORMAL for me to be going through the emotional rollercoaster I was on.
I stopped replying to messages.
I truly believed I would never get better.
I truly believed I was never going to be able to go home.
I started to accept that this was the life I was going to be living, filled with pain and having questions that would never be answered.
I was starting to get discolouration on my swollen joints, and my specialists still don't know why
2 Med Emergency Alerts
First Med Alert
This is the part of the blog post that I'm really worried about talking about, as I had 2 emergency situations in the hospital that were very close to going down a very dangerous route. I started coming down with a temperature and nothing was keeping it down and of course during this, my pain was very severe. Due to how high my temperature was, my nurse was in my room the entire time trying to get it down and checking it regularly. My nurse decided to check my heart rate and blood pressure...
Hold on
Pause.
The average heart rate is between 60-100 bpm.
My heart rate went up to 180 bpm.
Next thing I know my nurse has pressed a button and an alarm went off. My mum was ushered out of the room and weren't allowed to come back in and I was surrounded by about 8-10 nurses hooking me up to a heart monitor, asking me questions about my pain and temperature. I was in such a panic because I could see my heart rate increasing which made me panic more. Thankfully, one of the nurses turned the monitor around so I couldn't see it. A doctor came into the room and put a cannula in my arm asking me questions while other nurses hooked me up to different machines. I remember seeing them bring in a defibrillator that was put next to me and was within reach if they needed to use it. I never thought anything like this could happen to me.
I could hear my mum speaking to my dad on the phone outside saying "They won't let me in, they won't let me see her, I don't know whats going on, I don't know if shes going to be okay"and thankfully one of the doctor's heard her and let her in to see me. The main doctor who was setting up my cannula hooked me up to a pain relief machine and all I would have to do is press a button and it would release pain relief every 5 minutes. Finally, I started feeling some relief and slowly my heart rate and temperature came down.
i just remember seeing my mum break down crying, which made me cry because I hated putting her through that. I hated the fact that for a moment, she thought of the worst case scenario.
This was one of the most traumatic experiences for me, and it's still something I am trying to move on from. I thought and prayed that I would never go through that again, and yet, I did.
The delicious cocktail of tablets I have to take morning and night
The same thing happened the following night, yet they realised I had serotonin syndrome which they thought could be the reason as to why my heart rate was so high and why I was having such severe pain. Yet there were still questions that had completely stumped my specialists;
Why is my pain so high when all of my tests are coming back negative?
Why am I getting discolouration of my swollen joints?
Why aren't the steroids working? What else could I do?
As this med alert happened, my mum and I didn't panic as much as we knew why it was happening and hoped they would be able to get it under control. They took me off half my pain relief and the following weeks were some of the hardest I had been through. My heart rate went up to 185bpm.
Important family meeting with all of my specialists and the rehab specialists
I then had a meeting with all of my specialists, trying to figure out a game plan for the next following weeks. We talked about me moving to the rehab clinic and the new treatment I was to go under.
I hadn't really had any improvement of my joints and was feeling hopeful for some positive answers from my specialist but I was met with possibly the worst thing you could want to hear.
"We failed you."
"I'm sorry, but we don't have the answers you are after."
"This is one of the most complex cases we have seen with your illness."
"We can only hope for the best, but I'm sorry, there is nothing more we can do for you"
"We can only wait and see if this new treatment works, but we have to be realistic about this"
This is probably the strongest I have EVER been. I didn't cry, I didn't show that I was disappointed, instead I asked;
"Well, what is the next step from here?"
The next step from here was Rehab. I was moved to the Rehab clinic and over the course of three weeks I was pushed physically, with hydrotherapy and gym sessions. I was seeing a new psychologist, I was working hard with my physio and O.T to try and get out of there. I was rewarded with day passes to go home and just have the smallest sense of normalcy.
One of the day passes I had
Being able to see a movie and get dinner on one of the day passes I had
Slowly, I started to reduce the swelling and pain in my joints and started becoming more and more independent. My rheumatology team visited me and said,
"We never expected you to recover like this, we thought that being in a wheel chair and dealing with the pain was going to be your new normal"
I cannot tell you how good it feels to know I proved them wrong. I cannot tell you the amount of pride I felt because despite the odds, I did it.
I made it.
Eventually, I made it home and although I still had major joint issues and problems, I kept trying to fight back.
side effects of the steroids
#lovinlife
I was on blood thinners that would be injected into my stomach daily and left the most loveliest bruises
Recovering from one of the most traumatic events of my life was not an easy thing and is still something I am trying to overcome. Mentally, I have never been as anxious and depressed as I was. I was so happy to be home but never expected trying to overcome this would be as hard as it was. I added another specialist to my team, a pain psychologist who has helped me immensely.
It was hard opening snapchat and seeing my friends go out to dinner, go to concerts and go out clubbing which is something I wasn't able to do and made it very hard for me to accept my current situation.
I'm still not able to go clubbing or go to a concert, but slowly I am starting to socialise more and trying to move forward with my life. I now have full functionality of my joints and on a day to day basis, don't have any pain.
I still have a very long way to go, but I'm positive because despite the odds, I did it.
Despite the odds, I have been able to for the past 2 months live a normal and healthy life.
My specialists still aren't 100% sure if I have enteropathic arthritis and are thinking I may have psoriatic arthritis. I hope to one day have a definite diagnosis!
This was a very long blog post! Thank you if you are still with me. This was a very hard blog post for me to write and I wasn't able to go into as much detail as I would have liked to in fear of this blog post being too long. I would love to write more blog posts similar to this, and definitely plan on doing so in the future.
If you would like any information on Ulcerative Colitis, the website below has been very helpful and beneficial for me.
https://www.crohnsandcolitis.com.au/
