Crohn's Disease Forum » Your Story » Recently Diagnosed, New Member To Forum


05-24-2014, 09:26 PM   #1
HarryHiggins13
 
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Recently Diagnosed, New Member To Forum

Hello everybody!

After recently being diagnosed and viewing the site a few times over the past few months, I've finally decided to take the plunge and register. No idea why I didn't do it before, but I've got around to it now, so here I am!

Note: This post is kind of long so there's a summary at the end

I suppose I should start by telling you a bit about myself and how I ended up here.

I'm a 19 year old male living in Tamworth, England (Tamworth is a town just outside of Birmingham) and I am currently sitting A level exams in Biology, Chemistry and Maths. I live with my Mum, Dad, older brother and two dogs.

So, here's how it all started. Back in January 2014 I went to the doctors with a sinus infection. I was given an antibiotic called Clarithromycin. Turns out clarithromycin works wonders as a laxative as well! After taking only one antibiotic, I was back at the doctors and given an alternative, can't remember which one, it's not really relevant I suppose.

Anyway, the sinus infection cleared up but after a few weeks I noticed my stomach was still not happy to say the least. I went back to the doctor and was prescribed mebeverine for IBS. These too, were ineffective.

After a few weeks I was back at the doctors again (felt as if I was spending more time there than at home!) this time for blood tests. After getting the results I was told I had a CRP (I think?) of 80 or so, and another inflammatory marker was high. Since my Mum also has Crohn's Disease, this started ringing alarm bells in our heads.

I was referred to a gastroenterologist, but the appointment was months away. Looking back I know this is a short period of time to wait, but any length of time feels like an eternity when you struggle as us IBD sufferers do I suppose. At this point I couldn't keep anything down, anything I ate either passed straight through me or I vomited up. I had a fever pretty much all of the time, and intense abdominal pain. Up all hours of the night, either writhing around in agony or on the toilet. I don't know why I'm telling you all this, you've all been here!

So anyway, the consultant appointment came around and I was sent off for a colonoscopy and later on an MRI scan (still waiting on the MRI results). Immediately after the colonoscopy which was on the 6th April, I was put on 40mg Prednisolone/day and Asacol tablets with no real explanation of what was going on.

The doctor rang up to diagnose me late April time, the conversation went a bit like:

"Your colonoscopy report shows symptoms consistent with that of Crohn's Disease"

"Ok so what do I do now?"

"An appointment has been made for you"

This was obviously a shock, but was kind of expected as well. Since then I've not been told anything. I was given a name of a disease and that's it, been pretty much left in the dark about it all. Luckily my Mum has been through it all and has been a massive help and support, along with the rest of my family and my girlfriend.

I've got an appointment on Wednesday (28th May) which will hopefully shed some more light on what's going on, as at the moment I really don't have a clue!

I know I sound as if I'm bitter for the treatment that they have given me but I'm really not, they've been excellent, just wish I knew a bit more about what's going on and what their plan is for me.

Thanks very much for reading all of that wall of text, I didn't intend for it to be so long!

Tl;dr - New user, Crohn's diagnosed, currently on Prednisolone, not sure what the plan is for the future.

Harry

EDIT: Just thought I'd add a little footnote and say that this is all fresh and scary to me, any advice you might have or questions you want to ask are welcome.

Also, I'm thinking of starting a blog to document my 'journey' so to speak, any suggestions for where to start? I think it'd be really helpful for me (and maybe others) to get all my feelings down somewhere and hopefully I can help other people in similar situations.
05-24-2014, 10:14 PM   #2
DJW
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Hi Harry and welcome. I think a blog can be very therapeutic for yourself and helpful to others.
I'm glad you had your mother who knows about this disease.
It's still pretty overwhelming. Take it a day at a time. Keep us posted on your appointment.

Best wishes.
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05-24-2014, 11:55 PM   #3
HarryHiggins13
 
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Hi DJW, thanks for your message.

It can be overwhelming at times, yeah. Hopefully in time I will learn to cope better.

Will keep you updated as things develop!

Thanks again.
05-25-2014, 03:00 AM   #4
gemling
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Hi Harry,

Welcome. Your story certainly sounds familiar! Glad you are on Pred now, I wish they had done the same with me after my colonoscopy, but they didn't. Instead I had to wait for the MRI and waited again for a consultant to get back to me regarding the results. In the meantime, I ended up in hospital because of the pain and my large amount of weight loss.

Hope that the pred is making you feel better now and you get to discuss your treatment plan soon. The fact that your Mum has Crohn's too should hopefully mean she can help advocate for you.

Glad to see you here!
05-25-2014, 09:04 AM   #5
HarryHiggins13
 
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Hi Gemling,

I know I was very lucky to have been put on it so soon. I'm sorry to hear that you ended up in hospital before getting the 'proper' treatment, hope you're doing ok now.

The prednisolone does seem to help but since I've been reducing it my symptoms have been getting considerably worse again, so will just have to wait and see what the doctor says.

Thanks again for your message, really lovely to have support from people on here.
05-25-2014, 10:26 AM   #6
Precious ones
 
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Hi - we are in the same process as you in that you get told something so life changing it is very scary but not that much information on what to expect. As a parent to a 10 year old just diagnosed it is very difficult, just want to know what to expect but it sounds like everyone is different. We too have been given strong meds to give to our child and have to just see how it goes, don't really get any choice in the matter. Waiting for out 12 year old to get tests now too as he has not been growing and showing similar symptoms to the youngest son. Bit more of a shock to us as don't know anyone in the family with it. It sounds like at your appointments you will maybe find out a bit more. I hope you get on ok with it all.
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05-25-2014, 10:44 AM   #7
HarryHiggins13
 
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Hi Precious Ones

I'm so sorry to hear that you are having to go through this with your children, I can only imagine how horrible and hard it must be for you. Luckily there are support networks such as this forum that we have and we can all try and stay strong together. I hope everything works out ok with your children. Being kept in the dark really doesn't help, I know, I wish they were more transparent as I think knowing what is going on helps put your mind at rest, well it does for me anyway.

I don't know if this applies to everyone but I think part of this disease is the unpredictability and learning when your body is telling you to slow down because it needs a rest! I tend to ignore it but then end up setting myself back, something I need to learn to manage.

If you ever need a chat or if I can help in any way (applies to anyone) just drop me a message and I will do my best to help, even if you just want to nag!

Thanks for your message


05-25-2014, 02:03 PM   #8
Hunt
 
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Hi Harry, sort of in the same boat as you.

Recently diagnosed and not sure what to do, been on these steroids for about 2 weeks now and seeing little improvement. Still feel the restraint on my normal day to day life because of my anxiety but getting there.

All the best pal.
05-25-2014, 02:48 PM   #9
gemling
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Hi Gemling,

I know I was very lucky to have been put on it so soon. I'm sorry to hear that you ended up in hospital before getting the 'proper' treatment, hope you're doing ok now.

The prednisolone does seem to help but since I've been reducing it my symptoms have been getting considerably worse again, so will just have to wait and see what the doctor says.

Thanks again for your message, really lovely to have support from people on here.
I am feeling pretty good right now, but like you I am starting to taper with the Pred. I just hope that the Pentasa does it's job and I stay feeling as good. Had a BBQ tonight because it was such lovely weather for it and think I may have over ate a little. However even that was nice to have happen as it's been so long since I was able to eat that much without being ill. However my stomach is grumbling a lot, so I will be more careful going forward. Just a part of the learning process I guess.

Hope your doctor can help you out. Maybe you will need to be on the Pred for a while longer and taper off of it more slowly, that can sometimes be the case.
05-25-2014, 03:02 PM   #10
ronroush7
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Welcome to the forum. It is scary but everyone is here for you.

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