- Joined
- Dec 27, 2012
- Messages
- 2,311
Hello
I don't know if there are many here that will remember me, but I thought I would share a bit about me, my journey and where I have been.
My name is Nicola, I am 32 on the 26th of December and I have been diagnosed with crohns disease since I was 19 years old. I had symptoms for five years before my diagnosis, and this meant that when I was finally diagnosed my bowel was so damaged I needed surgery. So, I had a hemi- colectomy when I was 20.
My crohns disease is predominantly in my small bowel with some upper large bowel involvement .
I have been a member of Crohns forum for quite a few years and was most active for the first 5-6 years after my diagnosis.
I have wanted to come back many times and there have been quite a few attempts but life and various illnesses have got in the way.
I was diagnosed with a rare-ish neurological condition called chronic cluster headaches. Cluster headaches are a really severe form of headache, they are not like typical migraines or even migraines, they are very severe and do not respond to normal painkillers, including morphine, and they are very sudden onset. They usually come in groups or "clusters" with multiple attacks per day over a period of days or weeks, maybe even months, and then there is usually a break. Unfortunately mine are chronic, which means I do not get that break, I maybe get a few hours or a day off here and there. This has been one of the biggest reasons why I haven't been active. Now I have oxygen at my home, which I can use to stop an attack, and if that doesn't work then I inject myself with a medication called sumatriptan. I also take melatonin as a preventative which hasn't got rid of my headaches but it has helped hugely.
Just as I was starting to feel like I could come back and be an active member of the community, I very suddenly lost my dad. Although I am 31, I still lived with my parents, and my dad helped me a lot with getting to appointments etc, especially since the pandemic. His loss was very sudden and traumatic, and I have been mostly focused on helping my mother, taking care of her as much as I can, while trying to take care of my health. Unfortunately some parts of my family have been very unkind to me since my dad's passing and things have been very stressful.
I have just recently started to feel like myself again, and after receiving some emails from the forum I thought I would come take a look.
Health wise I am still not in remission, I have constant stomach pain that ranges in severity and my nausea is pretty prominent at the moment. I am getting myself prepared to start seeking a potential endometriosis diagnosis, and I have been told that I potentially have Elhers Danlos Syndrome as well. I am also in a severe arthritis flare, and will be seeking a new treatment in the new year.
I have a lot of experience with the health care system in the UK, so if anyone needs help with that I am happy to try to assist. I am also available to chat to anyone that needs an ear or someone to vent to. I am looking forward to reacquainting myself with some old faces, and getting to know the new ones.
I don't know if there are many here that will remember me, but I thought I would share a bit about me, my journey and where I have been.
My name is Nicola, I am 32 on the 26th of December and I have been diagnosed with crohns disease since I was 19 years old. I had symptoms for five years before my diagnosis, and this meant that when I was finally diagnosed my bowel was so damaged I needed surgery. So, I had a hemi- colectomy when I was 20.
My crohns disease is predominantly in my small bowel with some upper large bowel involvement .
I have been a member of Crohns forum for quite a few years and was most active for the first 5-6 years after my diagnosis.
I have wanted to come back many times and there have been quite a few attempts but life and various illnesses have got in the way.
I was diagnosed with a rare-ish neurological condition called chronic cluster headaches. Cluster headaches are a really severe form of headache, they are not like typical migraines or even migraines, they are very severe and do not respond to normal painkillers, including morphine, and they are very sudden onset. They usually come in groups or "clusters" with multiple attacks per day over a period of days or weeks, maybe even months, and then there is usually a break. Unfortunately mine are chronic, which means I do not get that break, I maybe get a few hours or a day off here and there. This has been one of the biggest reasons why I haven't been active. Now I have oxygen at my home, which I can use to stop an attack, and if that doesn't work then I inject myself with a medication called sumatriptan. I also take melatonin as a preventative which hasn't got rid of my headaches but it has helped hugely.
Just as I was starting to feel like I could come back and be an active member of the community, I very suddenly lost my dad. Although I am 31, I still lived with my parents, and my dad helped me a lot with getting to appointments etc, especially since the pandemic. His loss was very sudden and traumatic, and I have been mostly focused on helping my mother, taking care of her as much as I can, while trying to take care of my health. Unfortunately some parts of my family have been very unkind to me since my dad's passing and things have been very stressful.
I have just recently started to feel like myself again, and after receiving some emails from the forum I thought I would come take a look.
Health wise I am still not in remission, I have constant stomach pain that ranges in severity and my nausea is pretty prominent at the moment. I am getting myself prepared to start seeking a potential endometriosis diagnosis, and I have been told that I potentially have Elhers Danlos Syndrome as well. I am also in a severe arthritis flare, and will be seeking a new treatment in the new year.
I have a lot of experience with the health care system in the UK, so if anyone needs help with that I am happy to try to assist. I am also available to chat to anyone that needs an ear or someone to vent to. I am looking forward to reacquainting myself with some old faces, and getting to know the new ones.
