My story so far

[Scarabia]

Hi, my name's Dan, I'm 18, was diagnosed with Crohn's disease in March 2014. I don't really know when the symptoms first began, but over the last year or so I'd get random abdominal pains, which I then started getting after eating, and obviously, people notice. My family were also saying I looked pale and after jokingly weighing myself, I discovered I'd lost around a stone. I saw the doctor, who took my blood and found out I was anemic. After worsened pain and a few more trips to the doctors (and blood tests and a chest x-ray), I was referred to the specialist.

The gastroenterologist seemed baffled at first, but said Crohn's was at the top of his list. I had an ultrasound scan, which came back fine, then I had to go in for a colonoscopy. This turned out to be a nightmare as I turned down sedation, then when I asked for gas and air, it turned out it makes me hallucinate and they had to stop about 10 minutes in. After not being able to find anything in the colonoscopy, I was told I would have a capsule endoscopy, which wasn't a bad experience (except for the klean-prep!). The results from this confirmed I had Crohn's of the small bowel, which made me feel relieved to finally have a name for it and for treatment to finally commence.

I was prescribed with 90 nutritional shakes, corticosteroids to have 6 a day for the first week, 5 for the second etc. and some calcium tablets. It was going well during the first few weeks, I was eating loads thanks to the steroids and gained over a stone, the pain had virtually gone and I was feeling much better about myself. Then as the dosage came down, the symptoms returned, I went back to my specialist who told to carry on with the steroids at 2 a day, and also gave me some Pentasa (which hasn't done anything). I'm awaiting a date for an MRI scan on my small bowel and see my specialist again on Monday.

Thanks for reading my story so far, I know it's a little bit long. Also, it's good to be part of the Crohn's community, I find it really helpful reading others' experiences.

 

[Grumbletum]

Hi Dan and a big warm welcome to the forum. I'm so sorry to hear about your Crohn's diagnosis. But I am glad you found the forum and hopefully we can help see you through this worrying time.
It can take a wee while to get on the right treatment regime. It sounds like your doctor is taking a 'bottom up' approach - starting with the milder meds first. If these are not working, they may have to move you on to something a bit stronger.
Have a look at the Treatment section of the forum and check out the NACC website. Doing a little research can help you look at what your options are and prepare you for what your doctor might discuss at appointments.
Let us know how you get on at your appointment.

 

[David]

Greetings and welcome to the community

I'm sorry that your symptoms have returned and that the Pentasa isn't doing much for you. I hope they're able to get your medications figured out soon so you can get in remission.

We're here for you anytime

All my best to you.

 

[Scarabia]

Thanks for the welcome and support, it's much appreciated. The pain's not so bad at the minute, if I start to feel as though I'm going to get some pain I just change the way I'm sat or laid which usually works, but it normally hits once or twice a day where it's absolutely agonising and makes me feel nauseous. Paracetemol is helping a little and I've also cut out a few foods which have crippled me in the past like certain fruits and spicy food.

 

[Grumbletum]

Sounds like a sensible approach to dealing with your pain, Dan. Keeping a diary of your pain and food intake and noting reactions can help you feel a bit more in control and the information could be useful for your docs too. If you have a smart phone, there are some good free apps for keeping a record i.e. GI Monitor.
Hang in there

 

[Scarabia]

Let us know how you get on at your appointment.

So, I have been to see my doctor, he's told me that I should stop with the Prednisolone now, and he says the next step is Infliximab or Humira, which I can choose from. Been a 'good day' today, too - no pain and a solid bm! Pentasa seems to be working too, only downside is the anemia is still making me tired and low on energy. But, plenty of positives and I feel as though I'm getting somewhere! :mario2: ('Cos you know, Mario.)