Hi. I'm new here and I've never written anything like this before, but I thought I'd share my story looking forward for your feedback and guidance
I have to apologize in advance for my English, i'm sure you'll find a lot of mistakes and typos
It's a long story so bear with me.
I'm thirty years old and I have crohn's disease
I'm sure you all know what that means and how it could affect your life
And I'm sure too that you're all facing difficult situations where you have to make a choice between two unpleasant options
It wasn't an easy journey for me to be diagnosed with crohn's, coz it wasn't a typical presentation
It started on October 2011 with fever, sweating and tiredness for three weeks. I went to see a couple of doctors where they made some tests but with no help at all.
I remember spending my 30th birthday in the hospital having my first ultrasound ever.
During that time, I did not take even one single day off from work, although my doctors advised me to, but I didn't want to coz I just started this new job and I haven't even finished the probation period yet.
So, for three weeks, I would go to work, Suffer through and try to do my job. I was living on panadol and brufen. I used to take a lot just to help with the bodyache and fever.
After three weeks, everything subsided without any obvious reason why.
It was very hard not knowing what was wrong, and I was afraid that It might happen again
I was still doing my medical work-up and do my follow-ups with my doctor, but still no clue on what's causing the fever, so he decided to do full body scan but insurance only approved the abdominal scan.
This was my first scan.
It showed "thickening of the terminal ilium"
For some reason I was expecting that the cause of my symptoms lies within my abdomen.
For years I've been having "irritable bowel syndrome" and I've been living with it and I wasn't taking any medication for it, but for couple of months before my symptoms appeared, my IBS started to get worse and it started to interfere with my life.
It was mainly irregular bowel habits with sudden urgency to go to the toilet. This made worried all the time. I was afraid of going anywhere with out having an immediate access to the bathroom
I was afraid of traffic, road trips, and even going to the cinema. It basically made me think twice before thinking of going out.
The CT scan showed some abnormalities In my gut, so I went to a gastroenterologist, who requested some inflammatory markers "CRP and ESR" which were very high, and he scheduled me for colonoscopy.
This was approximately 6 weeks after my symptoms appeared.
During those 6 weeks, I didnt have any abdominal pain nor diarrhea.
I had the colonoscopy, which showed that my terminal illum is inflamed and critically narrowed.
So I was started on
Pentasa 3gm, prednisolone 40mg, pariet 20mg and imuran 50mg
Initially, I was in denial, I didnt tell anyone. Even my family, I gave them vague answers about what was wrong with me.
I thought I could continue with my life as it was, like there is nothing wrong.
And I managed to do that until I had my first episode of abdominal pain
I don't know how to describe the pain
It felt like someone is grabbing my gut and really squeezing and twisting it so hard. And sometime time it felt like a ballon that has so much air in and is about to explode and on occasions it felt like someone is poking my intestine with a hot metal rod.
The pain was so severe and it was increasing in frequency.
My gastroenterologist told me to avoid all NSAIDS, and if I experience any pain, he advised me to have some anti-spasmodic, which i used but with no effects
I remember trying to sleep hugging the heating pad and waking up in the morning for work with no or little sleep. It was brutal. I also needed to go to the emergency room at night on several occasions complaining of stomach pain, and receiving intravenous analgesics with little effect. I even had tramadol tablets, but it didn't relieve my pain. one time,the emergency doctor wanted to admit me for intravenous pethidine, which I refused to.
That's when I knew that my life has changed, and this is going to be a permanent change.
And that's when I started to realize i need to involve others who are close to me.
I mean, Why didn't I seek anyone's support!
why haven't i told anyone about what I was going through !
I hated how people or even medical health professionals gives you the "aah" or "ooh" after you tell them that you have crohns disease.
I hated thier sympathy
I hated feeling weak.
I hated crohns and how it made me feel.
I went to see my gastroenterologist to discuss the recent developments regarding the abdominal pain, so he increased the imuran "azathioprine" to 100mg
2 days later, thats 3 weeks after i started the treatment for crohns, I had fever. A very high fever, reaching 40, I even went to work on the first day, second day was the weekend. I thought that it will go, but no, it kept on rising. So on new years eve, I went to the emergency room where I was admitted.
I celebrated the new year in the CT Scan room !! By now I got used to celebrating in the radiology department, coz I already spent my 30th birthday having the ultrasound
I was kept on high dose of intravenous steroids and 2 really potent antibiotics, along with my regular medications
The fever was relentless, refusing to come down. I was really weak. I didn't have the energy to go to the toilet.
And I wasn't responding to the treatment.
So they started to question the diagnosis of crohns and thought that it might be something else like tuberculosis, even though the skin testing and chest X-ray were both negative. But it was based on my poor response to high dose of steroids and the fact that fever was my only symptom on both occasions.
Now I'm puzzled and confused. I see the doctors coming to my room everyday looking as confused as I was. They told me it is very hard to differentiate between crohns and TB of the terminal ilium.
They have stopped imuran, coz it caused me to have very low white cell counts.
It was very hard on me to accept the fact that i suffer from crohns, now I'm being told I might not have it and this all could be just a TB infection, which is treatable with medications. I mean I could be cured after 6months of therapy.
Now I started to hope I have TB.
The lab had sent some of my specimens for another lab which was out of my country, coz they didn't have the specific test that would help in differentiating between the two.
And the result would come in 3-4 weeks.
I improved, the fever came down and I was discharged after 10 days.
Now, since the diagnosis was in question, it wouldn't harm to seek another opinion.
I went to another gastroenterologist who again scheduled me for both upper and lower endoscopy. Her endoscopy and biopsy results were suggestive of crohns and not TB.
But it also showed some abnormality in my duodenum. My duodenum was inflamed with inclusions bodies, which were suggestive of CMV infection.
It's a viral infection, which most of us had by the age of 25, it stays dormant in your bodies, but in times of low immunity, it can be a nightmare.
Now, doctors were puzzled on how to treat me
I can't take imuran, coz it made my white cell count drop
I need to be off of steroids. I had side effects, and it's risky with CMV, coz it might go from localized to disseminated infection
I can't take humira, coz my TB status is still not clear
Pentasa, is not doing anything, and it's not effective for ilial disease
My options were very slim.
So I either decrease the immunosuppression therapy "steroids" and risk have crohns flaring up on me, or keeping it as it is and risk CMV disease getting worse.
The doctors have decided, to taper down steroids, start valcyte "treatment for CMV" and start humira as soon as we get the TB result back
I was happy to know that I will be off of steroids soon. It gave me all kinds of side effects. For example, Acne, severe acne, which I never had as a teenager!! Weight gain, I gained 10kg. I was 62kg, now I'm 72kg.
After a couple of weeks, the TB result came from abroad, and it was negative.
So I don't have TB, I have crohns and on top of that, i have CMV disease.
I've already started on humira. It's been 8 weeks now. I stopped the prednisolone ''yay''
I'm still taking valcyte, pariet and pentasa, but I'm planning to discuss this on my next appointment. Also I take folic acid 5mg, ABC plus "multivitamin tablets, osteocare "vit D and calcium" and already recieved 2 doses of vitamin D injections, coz my blood level was very low. My inflammatory markers are back to normal, anemia corrected, my bowel habit became more regular and less urgent and finally I stopped having abdominal pain.
Last month I decided to take one week off. I wanted to have a break from everything. So I booked my tickets, made my hotel reservation and started planning my trip. I realized that I needed to take humira with me, and as you all know, it needs to be kept in a cold temperature. I called the humira agent and he thankfully came to my place with travel kit and explained to me how I can travel with it. I also contacted the airline and they have arranged for my humira to be kept in the fridge during flight time. When I arrived at the hotel, I asked the reception to keep the medicine in thier fridge, coz my mini fridge wasn't cold enough.
It was a hassle all the way through, but it made me realize, that I need to accept that I have a chronic, incurable medical condition that I need to live with.
I made peace with that last realization now.
My last appointment with my doctor, we talked about treatment options.
He said that I could go for surgery to resect my terminal ilium (since my disease is confined to the terminal illum only), and stop all medications, but he told me that there no guarantee it would not come back.
We also discussed whether to use monotherapy (humira alone) or with combination with imuran.
If I use humira alone, eventually my body will produce antibodies against the medicine rendering it ineffective, but if it was combined with imuran, it will increase its longevity but also increase the risk of having certain kinds of blood cancers.
I don't know whether to go for surgery, or continue with medical treatment, it being mono therapy or in combination.
I know this example of making a difficult decision, is going to come again and again in the future.
And I know that eventually surgery will be needed for either crohns itself or it's complications " fistula, fissures etc"
But..
Life with crohns means always facing dilemmas and being uncertain all the time.
Life with crohns means always having to make difficult decisions about your health.
a friend once said to me : ''everything will be okay in the end. if its not ok, its not the end''
finally,,, I've been having this joint pain for the past, its not increasing in severity, but the number of joints is increasing.
Typical,, nothing new, thats me and crohns. THE NEVER ENDING ROLLER COASTER
I have to apologize in advance for my English, i'm sure you'll find a lot of mistakes and typos
It's a long story so bear with me.
I'm thirty years old and I have crohn's disease
I'm sure you all know what that means and how it could affect your life
And I'm sure too that you're all facing difficult situations where you have to make a choice between two unpleasant options
It wasn't an easy journey for me to be diagnosed with crohn's, coz it wasn't a typical presentation
It started on October 2011 with fever, sweating and tiredness for three weeks. I went to see a couple of doctors where they made some tests but with no help at all.
I remember spending my 30th birthday in the hospital having my first ultrasound ever.
During that time, I did not take even one single day off from work, although my doctors advised me to, but I didn't want to coz I just started this new job and I haven't even finished the probation period yet.
So, for three weeks, I would go to work, Suffer through and try to do my job. I was living on panadol and brufen. I used to take a lot just to help with the bodyache and fever.
After three weeks, everything subsided without any obvious reason why.
It was very hard not knowing what was wrong, and I was afraid that It might happen again
I was still doing my medical work-up and do my follow-ups with my doctor, but still no clue on what's causing the fever, so he decided to do full body scan but insurance only approved the abdominal scan.
This was my first scan.
It showed "thickening of the terminal ilium"
For some reason I was expecting that the cause of my symptoms lies within my abdomen.
For years I've been having "irritable bowel syndrome" and I've been living with it and I wasn't taking any medication for it, but for couple of months before my symptoms appeared, my IBS started to get worse and it started to interfere with my life.
It was mainly irregular bowel habits with sudden urgency to go to the toilet. This made worried all the time. I was afraid of going anywhere with out having an immediate access to the bathroom
I was afraid of traffic, road trips, and even going to the cinema. It basically made me think twice before thinking of going out.
The CT scan showed some abnormalities In my gut, so I went to a gastroenterologist, who requested some inflammatory markers "CRP and ESR" which were very high, and he scheduled me for colonoscopy.
This was approximately 6 weeks after my symptoms appeared.
During those 6 weeks, I didnt have any abdominal pain nor diarrhea.
I had the colonoscopy, which showed that my terminal illum is inflamed and critically narrowed.
So I was started on
Pentasa 3gm, prednisolone 40mg, pariet 20mg and imuran 50mg
Initially, I was in denial, I didnt tell anyone. Even my family, I gave them vague answers about what was wrong with me.
I thought I could continue with my life as it was, like there is nothing wrong.
And I managed to do that until I had my first episode of abdominal pain
I don't know how to describe the pain
It felt like someone is grabbing my gut and really squeezing and twisting it so hard. And sometime time it felt like a ballon that has so much air in and is about to explode and on occasions it felt like someone is poking my intestine with a hot metal rod.
The pain was so severe and it was increasing in frequency.
My gastroenterologist told me to avoid all NSAIDS, and if I experience any pain, he advised me to have some anti-spasmodic, which i used but with no effects
I remember trying to sleep hugging the heating pad and waking up in the morning for work with no or little sleep. It was brutal. I also needed to go to the emergency room at night on several occasions complaining of stomach pain, and receiving intravenous analgesics with little effect. I even had tramadol tablets, but it didn't relieve my pain. one time,the emergency doctor wanted to admit me for intravenous pethidine, which I refused to.
That's when I knew that my life has changed, and this is going to be a permanent change.
And that's when I started to realize i need to involve others who are close to me.
I mean, Why didn't I seek anyone's support!
why haven't i told anyone about what I was going through !
I hated how people or even medical health professionals gives you the "aah" or "ooh" after you tell them that you have crohns disease.
I hated thier sympathy
I hated feeling weak.
I hated crohns and how it made me feel.
I went to see my gastroenterologist to discuss the recent developments regarding the abdominal pain, so he increased the imuran "azathioprine" to 100mg
2 days later, thats 3 weeks after i started the treatment for crohns, I had fever. A very high fever, reaching 40, I even went to work on the first day, second day was the weekend. I thought that it will go, but no, it kept on rising. So on new years eve, I went to the emergency room where I was admitted.
I celebrated the new year in the CT Scan room !! By now I got used to celebrating in the radiology department, coz I already spent my 30th birthday having the ultrasound
I was kept on high dose of intravenous steroids and 2 really potent antibiotics, along with my regular medications
The fever was relentless, refusing to come down. I was really weak. I didn't have the energy to go to the toilet.
And I wasn't responding to the treatment.
So they started to question the diagnosis of crohns and thought that it might be something else like tuberculosis, even though the skin testing and chest X-ray were both negative. But it was based on my poor response to high dose of steroids and the fact that fever was my only symptom on both occasions.
Now I'm puzzled and confused. I see the doctors coming to my room everyday looking as confused as I was. They told me it is very hard to differentiate between crohns and TB of the terminal ilium.
They have stopped imuran, coz it caused me to have very low white cell counts.
It was very hard on me to accept the fact that i suffer from crohns, now I'm being told I might not have it and this all could be just a TB infection, which is treatable with medications. I mean I could be cured after 6months of therapy.
Now I started to hope I have TB.
The lab had sent some of my specimens for another lab which was out of my country, coz they didn't have the specific test that would help in differentiating between the two.
And the result would come in 3-4 weeks.
I improved, the fever came down and I was discharged after 10 days.
Now, since the diagnosis was in question, it wouldn't harm to seek another opinion.
I went to another gastroenterologist who again scheduled me for both upper and lower endoscopy. Her endoscopy and biopsy results were suggestive of crohns and not TB.
But it also showed some abnormality in my duodenum. My duodenum was inflamed with inclusions bodies, which were suggestive of CMV infection.
It's a viral infection, which most of us had by the age of 25, it stays dormant in your bodies, but in times of low immunity, it can be a nightmare.
Now, doctors were puzzled on how to treat me
I can't take imuran, coz it made my white cell count drop
I need to be off of steroids. I had side effects, and it's risky with CMV, coz it might go from localized to disseminated infection
I can't take humira, coz my TB status is still not clear
Pentasa, is not doing anything, and it's not effective for ilial disease
My options were very slim.
So I either decrease the immunosuppression therapy "steroids" and risk have crohns flaring up on me, or keeping it as it is and risk CMV disease getting worse.
The doctors have decided, to taper down steroids, start valcyte "treatment for CMV" and start humira as soon as we get the TB result back
I was happy to know that I will be off of steroids soon. It gave me all kinds of side effects. For example, Acne, severe acne, which I never had as a teenager!! Weight gain, I gained 10kg. I was 62kg, now I'm 72kg.
After a couple of weeks, the TB result came from abroad, and it was negative.
So I don't have TB, I have crohns and on top of that, i have CMV disease.
I've already started on humira. It's been 8 weeks now. I stopped the prednisolone ''yay''
I'm still taking valcyte, pariet and pentasa, but I'm planning to discuss this on my next appointment. Also I take folic acid 5mg, ABC plus "multivitamin tablets, osteocare "vit D and calcium" and already recieved 2 doses of vitamin D injections, coz my blood level was very low. My inflammatory markers are back to normal, anemia corrected, my bowel habit became more regular and less urgent and finally I stopped having abdominal pain.
Last month I decided to take one week off. I wanted to have a break from everything. So I booked my tickets, made my hotel reservation and started planning my trip. I realized that I needed to take humira with me, and as you all know, it needs to be kept in a cold temperature. I called the humira agent and he thankfully came to my place with travel kit and explained to me how I can travel with it. I also contacted the airline and they have arranged for my humira to be kept in the fridge during flight time. When I arrived at the hotel, I asked the reception to keep the medicine in thier fridge, coz my mini fridge wasn't cold enough.
It was a hassle all the way through, but it made me realize, that I need to accept that I have a chronic, incurable medical condition that I need to live with.
I made peace with that last realization now.
My last appointment with my doctor, we talked about treatment options.
He said that I could go for surgery to resect my terminal ilium (since my disease is confined to the terminal illum only), and stop all medications, but he told me that there no guarantee it would not come back.
We also discussed whether to use monotherapy (humira alone) or with combination with imuran.
If I use humira alone, eventually my body will produce antibodies against the medicine rendering it ineffective, but if it was combined with imuran, it will increase its longevity but also increase the risk of having certain kinds of blood cancers.
I don't know whether to go for surgery, or continue with medical treatment, it being mono therapy or in combination.
I know this example of making a difficult decision, is going to come again and again in the future.
And I know that eventually surgery will be needed for either crohns itself or it's complications " fistula, fissures etc"
But..
Life with crohns means always facing dilemmas and being uncertain all the time.
Life with crohns means always having to make difficult decisions about your health.
a friend once said to me : ''everything will be okay in the end. if its not ok, its not the end''
finally,,, I've been having this joint pain for the past, its not increasing in severity, but the number of joints is increasing.
Typical,, nothing new, thats me and crohns. THE NEVER ENDING ROLLER COASTER
