For the past few months i've been reading up on this forum and i thought i'd introduce myself.
My name is Yanet, i'm 24 years old and i live in the Netherlands.
I was diagnosed with Crohn's disease at the beginning of this year on January 5th 2013.
It al started a few days before New years when i ate some weird soup and started cramping up and started having bad diarrhea with chills, weightloss, pain and a bad fever. Finaly i decided to call the emergency doctor on 1st of January when i just couldn't take the pain anymore.
From there they sent me to the ER under the suspicion of having an appendicitis. They took blood etc and then tried for an echo but they couldnt see my appendix but they did see a cyste on my ovary.
They weren't sure about the appendix and decided to admit me and wait for the blood results and get a gynocologist to take a look at the cyste.
Eventualy the cyste turned out to be nothing and my bloodwork was trough the roof so they started me on a super high dose of anti-biotics to get the fever under control and then wait the next day for a CT.
The CT confirmed that my appendix was just fine but they saw something weird with my colon. They referred me to a GI who decided to take stool sampels and scedule me for a colonoscopy.
The stool sample provided them with a bacteria that was having himself a party in my intestines. The Campylobacter bacteria and the colonoscopy where they took biopsy of tissues...provided them with a clear picture.
I had lesions on my large colon and around the mouth where it goes to my small bowel. That together with the pathology report yielded the diagnosis Crohn's disease.
After that they decided to threat the bacteria first and then do an small bowel MRI and a gastroscopy to see if the Crohn's had spread to my stomach and further because i wasent eating and it was bothering me.
The gastroscopy showed the crohn's had started but because i was nuked with so much anti biotics it stopped and i only had a cronic gastritis left in my stomach. The rest of my bowels were clean.
In total I spent 3 weeks in the hospital because everything was complicated due to allergic reactions i kept having to the medications. First of the CT dint go without a hickup...I am allergic to jodium which is used in the dye in the contrast....they told me to try it anyways and that it would be fine....after only 1 cup of the stuff my body proved them other wise by having a severe reaction....After all that, that 1 cup was sufficient for the CT. The Colonoscopy was traumatic cuz the meds dint kick in enough so i woke up when they were poking me from behind and taking the biopsy...to say that was painful is just an understatement.:ybatty:
Furthermore they tried to give me a large dose of Prednisone to calm my system down . I reacted allergicly to that, after they switched me to Entocort...which also din't last long in my system.
The only thing that semi worked was the Salofalk (mesalazine) Enema which was used to treat this localy....Next to all this experimenting they kept pumping me with anti-biotics to kill the bacteria.
After my reactions in the hospital to corticosteroid drugs, they wanted to test me to be sure i was truly allergic. And as my luck would have it i'm severly allergic to it all. My Allergist / Immunologist doctor and my GI were surprised at how bad it was. So corticosteroid drugs were rulled out as treatment right away.
I was also tested to see if i was Lactose-Intollerant...turns out thanks to my crohn and the bacteria who did mayor damage to my intestines I am now super Lactose- Intollerant so i was also refferd to a Dietician to help me with my diet and help me with the use of Medical Nutritional drinks because i havent been eating much.
The Medical Nutritional drinks I use are Nutricia Nutridrink, Ensure Plus and Ensure Plus Fresh. Next to that i eat small portions trough out the day when i can...my stomach doesnt always take everything. And i replaced everything with lactose intollerant products. I stay away from soda, fried foods and spicy foods. I try to use fresh herbs most and try no to use much butter or oil when cooking...preferably i dont use any
In the 2 months after my Hospital stay i've tried Azathioprine (Imuran) and 6 MP (Mercaptopurine (Purinethol, 6-MP) next to Buscopan for the cramps, Omeprazol for my stomach, domperidon for the naussea and Salofalk enema's.
Both medicines gave me allergic reactions and horrible side effects.
In total i've lost about 13 kilos and am still losing more slowly now. I'm still in a very active period and am suffering daily with fatique, cramps, bloathing, chills , diarrhea, pain in my lower right stomach....oo:
Its been 3 months now of trying new meds over and over again..
My body has been betraying me over and over again with the meds and its getting to a point where its just hard to keep a smile on my face.
I try to smile and be positive and i have wonderful support from my family and friends....but most of them dont understand whats its realy like....the roughnes of this disease and the toll it takes both mentaly and physicly.
And to try to wake up every day and try to do stuff eventhough your energy level is next to 0.
At the beginning of this week i had to quit 6 MP cuz of the allergic reactions after just 2 weeks of trying it....
The GI doctor now wants to go ahead and Nuke me with Remicade.
Before i can start he's going to test me for Tuberculose and take a lung X-ray.
This happens on friday and i get the result of the Montoux test for TB on monday...after that on thursday i have an appointment with my GI.
Here in the Netherlands they have a wonderfull team of GI nurses and doctors who all work together and they have all been very supportive and patient in trying to find the right meds..
Right now i'm reading up as much as possible on Remicade to educate myself and to prepare myself...
I'm pretty sure i might have forgotten something in my story as its pretty long so feel free to ask anything. Also excuse my tiny typo errors as i've been typing pretty fast and wasen't really paying to grammar...
Xx
My name is Yanet, i'm 24 years old and i live in the Netherlands.
I was diagnosed with Crohn's disease at the beginning of this year on January 5th 2013.
It al started a few days before New years when i ate some weird soup and started cramping up and started having bad diarrhea with chills, weightloss, pain and a bad fever. Finaly i decided to call the emergency doctor on 1st of January when i just couldn't take the pain anymore.
From there they sent me to the ER under the suspicion of having an appendicitis. They took blood etc and then tried for an echo but they couldnt see my appendix but they did see a cyste on my ovary.
They weren't sure about the appendix and decided to admit me and wait for the blood results and get a gynocologist to take a look at the cyste.
Eventualy the cyste turned out to be nothing and my bloodwork was trough the roof so they started me on a super high dose of anti-biotics to get the fever under control and then wait the next day for a CT.
The CT confirmed that my appendix was just fine but they saw something weird with my colon. They referred me to a GI who decided to take stool sampels and scedule me for a colonoscopy.
The stool sample provided them with a bacteria that was having himself a party in my intestines. The Campylobacter bacteria and the colonoscopy where they took biopsy of tissues...provided them with a clear picture.
I had lesions on my large colon and around the mouth where it goes to my small bowel. That together with the pathology report yielded the diagnosis Crohn's disease.
After that they decided to threat the bacteria first and then do an small bowel MRI and a gastroscopy to see if the Crohn's had spread to my stomach and further because i wasent eating and it was bothering me.
The gastroscopy showed the crohn's had started but because i was nuked with so much anti biotics it stopped and i only had a cronic gastritis left in my stomach. The rest of my bowels were clean.
In total I spent 3 weeks in the hospital because everything was complicated due to allergic reactions i kept having to the medications. First of the CT dint go without a hickup...I am allergic to jodium which is used in the dye in the contrast....they told me to try it anyways and that it would be fine....after only 1 cup of the stuff my body proved them other wise by having a severe reaction....After all that, that 1 cup was sufficient for the CT. The Colonoscopy was traumatic cuz the meds dint kick in enough so i woke up when they were poking me from behind and taking the biopsy...to say that was painful is just an understatement.:ybatty:
Furthermore they tried to give me a large dose of Prednisone to calm my system down . I reacted allergicly to that, after they switched me to Entocort...which also din't last long in my system.
The only thing that semi worked was the Salofalk (mesalazine) Enema which was used to treat this localy....Next to all this experimenting they kept pumping me with anti-biotics to kill the bacteria.
After my reactions in the hospital to corticosteroid drugs, they wanted to test me to be sure i was truly allergic. And as my luck would have it i'm severly allergic to it all. My Allergist / Immunologist doctor and my GI were surprised at how bad it was. So corticosteroid drugs were rulled out as treatment right away.
I was also tested to see if i was Lactose-Intollerant...turns out thanks to my crohn and the bacteria who did mayor damage to my intestines I am now super Lactose- Intollerant so i was also refferd to a Dietician to help me with my diet and help me with the use of Medical Nutritional drinks because i havent been eating much.
The Medical Nutritional drinks I use are Nutricia Nutridrink, Ensure Plus and Ensure Plus Fresh. Next to that i eat small portions trough out the day when i can...my stomach doesnt always take everything. And i replaced everything with lactose intollerant products. I stay away from soda, fried foods and spicy foods. I try to use fresh herbs most and try no to use much butter or oil when cooking...preferably i dont use any
In the 2 months after my Hospital stay i've tried Azathioprine (Imuran) and 6 MP (Mercaptopurine (Purinethol, 6-MP) next to Buscopan for the cramps, Omeprazol for my stomach, domperidon for the naussea and Salofalk enema's.
Both medicines gave me allergic reactions and horrible side effects.
In total i've lost about 13 kilos and am still losing more slowly now. I'm still in a very active period and am suffering daily with fatique, cramps, bloathing, chills , diarrhea, pain in my lower right stomach....oo:
Its been 3 months now of trying new meds over and over again..
My body has been betraying me over and over again with the meds and its getting to a point where its just hard to keep a smile on my face.
I try to smile and be positive and i have wonderful support from my family and friends....but most of them dont understand whats its realy like....the roughnes of this disease and the toll it takes both mentaly and physicly.
And to try to wake up every day and try to do stuff eventhough your energy level is next to 0.
At the beginning of this week i had to quit 6 MP cuz of the allergic reactions after just 2 weeks of trying it....
The GI doctor now wants to go ahead and Nuke me with Remicade.
Before i can start he's going to test me for Tuberculose and take a lung X-ray.
This happens on friday and i get the result of the Montoux test for TB on monday...after that on thursday i have an appointment with my GI.
Here in the Netherlands they have a wonderfull team of GI nurses and doctors who all work together and they have all been very supportive and patient in trying to find the right meds..
Right now i'm reading up as much as possible on Remicade to educate myself and to prepare myself...
I'm pretty sure i might have forgotten something in my story as its pretty long so feel free to ask anything. Also excuse my tiny typo errors as i've been typing pretty fast and wasen't really paying to grammar...
Xx