Crohn's Disease Forum » Your Story » My story so far!

06-26-2013, 01:59 PM   #1
Join Date: Jun 2013
My story so far!

Hi guys, I am making this as when I found out I had crohns, I found it helpful to read other peoples stories, and sometimes they'd make me feel better and give me hope that I will be okay. i am a 15 year old girl in my last GCSE year.

So, I got diagnosed on March 28th 2013. However, I believe symptoms started in November 2012. Yes, quite a few months away. Now, i do not know if this symptom had anything to do with Crohns but, it might as this is when i believe the weight loss had started happening.

In November, i had been getting a pain in my oesophagus. This would hurt quite a lot when i ate food, which i guess led to my weight loss. This went on for about 2 weeks. It was quite painful. i remember thinking i cannot wait for the pain to go away so i can enjoy food again. I wouldn't want to eat because of the pain. However, after taking some medicine it magically disappeared yay!

Nearing the end of December, i started getting my official Crohns symptoms. First came the weight loss, In December i was around 45kg, and in November i was about 48kg, so this was my normal weight. As you can see it already dropped 3kg. I then got the diarrhea, i had it about 1 time every day, in January i started noticing this more and more. I was sure this wasn't normal for a whole month. i also started getting my stomach pains, the pain was excruciating! I would cry sometimes because it got that bad. i would go sit next to the radiator on the floor and curl up in a ball and cry. The pain was mostly at the bottom of the stomach. i found by curling up, it would help me ease the pain. I also got a red spot near the anal area, called a skin tag, this would hurt a lot. I was told it was just because of the stools everyday and it irritating the anal area. So i guess its nothing to worry about.

I then went to the doctors, the doctor gave me different medicine every week i went as nothing was working. I first tried normal paracetamol, this did not work at all. She first gave buscopan, this i felt did practically nothing, maybe on some days it did help a bit. After this not working i then took codeine which is quite a strong drug. This also, done nothing. I then had to take blood tests and stool samples. My stool sample showed high inflammation, which led to the Crohns disease diagnosis.

in my blood results i found that i was also anaemic, which made me tired, as if i already wasn't enough. i felt very drained and had absolutely no energy. I also found out that iron supplements irritate the bowel, so i was told to come off them.

Seeing as no medicine helped me i had to be in pain the whole time, then beginning of March, i started vomiting out my food as soon as i ate. i already wasn't eating enough food as i had completely lost my appetite as my stomach was continuously hurting. But now the food that i was able to eat was coming out of my mouth as well. i practically had no food inside me. This led me to being very weak and having no energy even more so then i did before because of the loss of water in the stools and the stomach pains.

i then had to do a colonoscopy, this was quite scary for me as i have never needed to go to the hospital for something like this and ive never been put to sleep so this was my first time. i had to sleep overnight. This is what gave my clear diagnosis. i had a lot of inflammation in the stomach and a lot of ulcers everywhere. For the ulcers to be treated i was given a medicine called omeprazole to heal them, which would slowly heal the ulcers and stop me from vomiting. I've always hated vomiting and it had become a regular daily basis which was no fun at all.

i then had to go back to hospital to start my modulen milk as they thought i would have difficulties. i disliked the taste on its own so i put 3 teaspoons of strawberry powder in 400ml. The first few days i had hardly managed to drink just under 1000ml when my target was 2000ml a day. This was a huge amount for me, as my stomach was not used to having this much food and calories, as i couldn't hold any food in the stomach. i am already a very picky eater and quite naturally slim. i was vomiting some of the milk everyday, but slowly the vomiting stopped. After 5 days i went home over the weekend and had to come back on Monday and drink 2000ml on both days in the weekend. As i was drinking so little, they suggested having the tubes in my nose. i did not like the sound of that so in the weekend i made my self drink it. Before starting my modulen course i was 37kg. So lost quite a bit of weight. They also said if my body did not accept modulen id have to go on steroids and i did not like the sound of the side effects.
Thankfully, i did accept the modulen, and it helped me very much. it practically got rid of all the pain and the stools were formed again and no more vomiting. i also slowly put on weight, around 1kg per week. But sometimes it wasn't exactly 1kg and i got upset but its okay because at the end of the day you'll put it on in time. I did have the occasional stomach pain, however it lasted for about 5 minutes and went away. It also wasn't near the pain it was before. i went on the milk for about 7 weeks. it was meant to be 6, however i pushed it back a week as i had a lot of exams so thought i would benefit having milk as i had a lot of stress.

While drinking the milk my stools had turned a white colour which then went to grey. Of course i was worried, but it was nothing, it was just my body adjusting to the different food income.

I found not having food very very hard within the first 2 weeks. i would sometimes cry because of it, as it is hard changing your whole day plan and removing having food from it. i love cooking, and really wanted to start cooking meals for my sisters and parents, so i started watching cooking shows and videos while drinking modulen. i was basically torturing myself, and i have no idea why i did that, but it made me feel better in some ways, and would make me think i can have everything just after. So i guess it was some motivation as well. i also used to sit with my siblings while they ate!! They obviously didn't let me though. i probably wouldn't advise this haha. after the 2 weeks, it became normal for me and i did not mind not eating. i actually started to enjoy the milk!!

My milk routine was one 400ml in the morning at 7.30am as i had school. Then another 400ml mid morning around 10:15am (as this is when i had break in school). Then another 400ml at 1pm. Then another 400ml at 4pm. Then one last 400ml at 7pm. I would then go to sleep around 9pm so it would give me time for it to settle in my stomach before i would lie down.

it had come 7 weeks and was time to come off so we lowered it to 1500ml and i started eating one meal a day. i chose dinner and had it around 4pm as its not good to go to bed with a full stomach of food. i started with salmon, chicken, potatos and vegetables. after another week i practically ate anything. But obviously tried to eat healthy most of the time.

However, unfortunately those stomach pains and diarrhea were slowly coming back. i had thought that after the modulen my crohns might go away for a long time. But i was more than wrong As soon as i dropped it too 1000ml they were defiantly back. We then had to discuss azathioprine with doctors.

Now this is the stage that i am at. i was on 1000ml but decided myself to go back up too 1500ml as my stomach started hurting too much and my diarrheah is already back. By doing this it defiantly made a difference. Now i am just waiting to take the medicine, have to go in this week and start my course.

i am obviously worried as one of the side effects of this medicine is cancer. i was very upset when i was told this, as i guess this is the only thing that will help and i have to take it. However, i will deal with it when it comes to that, there is no point dwelling on it now, when i don't know if or when it will come. So i may as well pretend i never heard it! i know its upsetting but there's literally nothing i can do about it. Also, the medicine doesn't work for like 3 months! so i have to be in pain till then!! sad times. Hopefully my body accepts it though as there is a chance it wont.

i have put weight back on and i am currently 47kg! yay. The stomach pains are back and the diarrheah is too. however the pains aren't as bad as before, but the stools is. The skin tag is back too unfortunately.

im happy the pain went for those weeks though. Luckily during my exams i took it! Unfortunately, Crohns disease came to me in the final year of GCSE exams, so i couldn't do my best in them as i was constantly in pain and couldn't revise. However, i believe everything happens for a reason. i was very upset, as GCSEs are very important, but there's nothing i can do now, so i guess i had to stop worrying about them. Remember that they can be retaken but your health cannot! i was very stressed during exams, which obviously made my situation worse, but i would advise you to have minimal stress levels as stress really does worsen it!

i also had to take vitamin D supplements for around a month and phosphate tablets for a week.

Also, my period has been gone since January now, and its now nearing july, apparently this is a normal thing in crohns, i never knew this till recently, and it worried me, but now i guess i know its normal. i still haven't got them back though even though im meant to be recovered.

I have also been having a lot of back pain recently in the lower back, the pain is the same as how my stomach used to hurt. Does anyone else have this?

Thank you for reading and i will answer any questions! Sorry for it being so long!!

Last edited by Crohnsdisease101; 06-26-2013 at 02:43 PM.
06-26-2013, 02:58 PM   #2
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Join Date: Dec 2010
Location: Southampton, United Kingdom

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Hello and welcome to the forum.

I'm sorry to hear you have been through so much it really is tough sometimes but you sound like you have handle things really well and in a really mature way.
The cancer risk with azathioprine is quite low, I don't know the exact figure but someone else may know. I really hope it works for you quickly and that it won't take 3 months.
A lot of people get joint and muscle pain during flares if it continues let your GI know and they may want to look into it more.
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Pentasa, Aza, 6mp, Remicade, Humira and Sulfasalazine

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