- Joined
- Mar 27, 2011
- Messages
- 102
Ever since I can remember, I've been quite small and skinny for my age, and go to the bathroom more often than others. It was never anything serious, so my parents just blamed it on bad genes.
Flash forward to 6 years ago, when I was 11 years old. My parents noticed I was getting skinnier, going to the bathroom more frequently, and getting more fevers. We went to the GP quite a few times, and she'd give me antibiotics or just say 'it's nothing, come back later.'
Shortly before my 12th birthday, the GP decided to scan (I think an MRI?) my body, and the results were not what she expected so I was referred to a specialist. After a few more scans, he said I had a mild case of Crohn's, and I was given Athiozioprine, and was only allowed to drink Modulen IBD for 2 months. I felt much better.
During the next two years, I was in pretty good shape. I had figured out what I can and can't eat (I can't eat daiy, wheat, gluten or spices, and some fruit/veg), and apart from a few small dips in my health, I was fine. I was taking a few pills a day, and I had infusions every 6 weeks.
But then one winter, I got the cold. This worsened to the flu, and got even worse, and by Summer, I was a mess. I was immune to most of my medications. This was during exam week, so I decided to carry on going to school, but looking back I regret that decision, considering 14 year old exams arent even that serious. School was horrible; I had NO energy at all, and when I wasn't doing an exam I would just sit down looking into the distance. I didn't eat anything. I specifically remember waking up at the crack of dawn every morning, pouring myself a teacup of Modulen IBD, and drinking it on the couch. I would then spend the next hour sitting completely still on the couch, because if i even moved one toe I would rush to the bathroom to throw up and have diarhoea (I can't spell that word, sorry!). This carried on for a few weeks, and my doctor didn't do much to help except for give me antibiotics. The worst part of all was that not a single one of my friends noticed that I wasn't feeling well. I'm not the kind of person who ever complains about my illness, but I like people to acknowledge the fact that I do have problems.
The next few weeks were a blur, I can only remember specific points. I remember being admitted into hospital the day after exams, and the illness only got worse. My parents were very annoyed at my Dr for never helping us or giving us any information or advice (he lived in another city, and only came down to London once a week). After some scans, they realised that my intestine (which is where my Crohns was most active) had become a lot worse in certain places, mostly near the bottom. So, the doctor and a surgeon decided that a permanant stoma bag was the answer. BUT, I would have to wait two weeks because they were both on holiday. My parents decided there was no way we were going to wait two weeks, so they asked for a different doctor. Luckily, this was the best decision we ever made. The first doctor was lovely, and I thank him for everything he did, but the second one lived closer so put more time into actually explaining what was going on. He also decided to give me temporary surgery instead of permanant, so that once I get better I can go back to normal. I am so grateful of that decision.
I was moved to another hospital and different doctors and surgeons, all of whom were amazing. I recovered amazingly quickly, and to this day I still believe it is because of my positive attitude. I got used to the stoma bag very quickly, with the help of my family.
Now, three years later, I am upset to say I am not feeling well again. I have been through all sorts of medications, and I tried the infusions again. After just 4 tries, it was apparant that they had lost their effect. I had one or two more, and last week I visited my doctor (my third one, when I turned 16 I was switched to an adult doctor). She told me that instead of infusions, I should try hummera (again, I cannot spell!! :/ ), and I'm having my first dose on Tuesday! I'm really scared and stressed, especially since this is all going on at the same time as my AS mocks and various family problems.
If anyone has any advice or additional information on the hummera treatment (where you inject yourself every other week), I would love to hear it!
thank you for reading
Flash forward to 6 years ago, when I was 11 years old. My parents noticed I was getting skinnier, going to the bathroom more frequently, and getting more fevers. We went to the GP quite a few times, and she'd give me antibiotics or just say 'it's nothing, come back later.'
Shortly before my 12th birthday, the GP decided to scan (I think an MRI?) my body, and the results were not what she expected so I was referred to a specialist. After a few more scans, he said I had a mild case of Crohn's, and I was given Athiozioprine, and was only allowed to drink Modulen IBD for 2 months. I felt much better.
During the next two years, I was in pretty good shape. I had figured out what I can and can't eat (I can't eat daiy, wheat, gluten or spices, and some fruit/veg), and apart from a few small dips in my health, I was fine. I was taking a few pills a day, and I had infusions every 6 weeks.
But then one winter, I got the cold. This worsened to the flu, and got even worse, and by Summer, I was a mess. I was immune to most of my medications. This was during exam week, so I decided to carry on going to school, but looking back I regret that decision, considering 14 year old exams arent even that serious. School was horrible; I had NO energy at all, and when I wasn't doing an exam I would just sit down looking into the distance. I didn't eat anything. I specifically remember waking up at the crack of dawn every morning, pouring myself a teacup of Modulen IBD, and drinking it on the couch. I would then spend the next hour sitting completely still on the couch, because if i even moved one toe I would rush to the bathroom to throw up and have diarhoea (I can't spell that word, sorry!). This carried on for a few weeks, and my doctor didn't do much to help except for give me antibiotics. The worst part of all was that not a single one of my friends noticed that I wasn't feeling well. I'm not the kind of person who ever complains about my illness, but I like people to acknowledge the fact that I do have problems.
The next few weeks were a blur, I can only remember specific points. I remember being admitted into hospital the day after exams, and the illness only got worse. My parents were very annoyed at my Dr for never helping us or giving us any information or advice (he lived in another city, and only came down to London once a week). After some scans, they realised that my intestine (which is where my Crohns was most active) had become a lot worse in certain places, mostly near the bottom. So, the doctor and a surgeon decided that a permanant stoma bag was the answer. BUT, I would have to wait two weeks because they were both on holiday. My parents decided there was no way we were going to wait two weeks, so they asked for a different doctor. Luckily, this was the best decision we ever made. The first doctor was lovely, and I thank him for everything he did, but the second one lived closer so put more time into actually explaining what was going on. He also decided to give me temporary surgery instead of permanant, so that once I get better I can go back to normal. I am so grateful of that decision.
I was moved to another hospital and different doctors and surgeons, all of whom were amazing. I recovered amazingly quickly, and to this day I still believe it is because of my positive attitude. I got used to the stoma bag very quickly, with the help of my family.
Now, three years later, I am upset to say I am not feeling well again. I have been through all sorts of medications, and I tried the infusions again. After just 4 tries, it was apparant that they had lost their effect. I had one or two more, and last week I visited my doctor (my third one, when I turned 16 I was switched to an adult doctor). She told me that instead of infusions, I should try hummera (again, I cannot spell!! :/ ), and I'm having my first dose on Tuesday! I'm really scared and stressed, especially since this is all going on at the same time as my AS mocks and various family problems.
If anyone has any advice or additional information on the hummera treatment (where you inject yourself every other week), I would love to hear it!
thank you for reading
