New boy from England

New boy from England *update*

Hi guys, Im Mitch, 20, from the UK

After being diagnosed officially last week and then doing some research on the Internet about the disease, I stumbled upon this forum so I thought I would sign up, it looks very informative and helpful

Anyway, I'll start from the very beginning (I hear its a very good place to start!) when I was around 6 I was told I was lactose intolerant due to having bad stomach pains and a lot of mouth ulcers, so I stopped all dairy.. This stopped the stomach pains but I've had severe mouth ulcer flare ups all my life.. So when I got a little older I took it upon myself to eat dairy again (badass like that you see! lol)

So with ulcers very often I went to see the doctor many times about it, just to be told 'ahhh, it'll pass over' it didn't.

Id often had times when I could barely move my mouth and have terrible abdominal pains... doctors said it'll blow over, certain family members and even my now ex girlfriend thought I was putting it on... Nice of them!

Skip forward a year or so to July this year and everything got a lot worse, crippling abdominal pains, a lot of toilet trips and very tired... After being told so many times it's nothing, I just put up with it... Until september, when over the space of 3 weeks I lost just over 1stone... Which when your only 10stone, it's quite noticeable aha, and everything just got worse, went to see doctor again, got given a load of drugs which did nothing, then finally got referred to a specialist who managed to diagnose the Crohns within a week

He also found a stomach ulcer, 24cm section in the bowel very inflamed and cover in ulcers, several abscesses which had been leaking into fat and very close to leaking into my body, he said had it not been for the fat, I might not have been here.. Which was quite sobering

I was put on a specific diet, and a course of anti-biotics and told to take it steady for a few weeks, which I have finished this weekend and am feeling a whole lot better I'm glad to say, tomorrow I am off to see another specialist to sort some long term medication.


So that's my story! Sorry for rambling on and I hope I didn't bore you too much.. I'm just looking forward to getting better and enjoying myself again

Hello Mitch
Welcome to the forum.
That is quite a sad story you have just related and illustrates a depressingly poor state of the art of medicine.
It is really good to hear that at last you are in capable hand and responding to medication.
Keep up the good work and continue to get better.
You will find lots of help and similar stories on this forum.
Just make sure when the decision is made for long term treatment that you continue
to take prescribed medication.
It is a sad fact that Crohn's is a recurring illness and must be carefully monitored by
well qualified gastroenterologists.
Feel better soon
Hugs and best wishes
Trysha

Thanks for the kind words trysha.. Yeah the healthcare system is crap really, I'm lucky enough to have private healthcare now though.. Which is why it only took the specialist a week to diagnose it! Im very very lucky to have it

Im not gonna let crohns hold me back!

Hello Mitch and welcome to the forum

It is always sad to hear when another one of 'us' goes undiagnosed for so long due to docs not properly looking into things. Out of interest what was the diet you were put on? I am pleased to hear that your are feeling better and hope this continues, please keep us updated on how things go with the appt tomorrow - it may be worth taking a list of questions with you so you don't forget anything.

AB
xx

Hey

I was told no fiber or very little, no spicy foods, no alcohol or carbonated drinks and eat little and often... I mostly ate white bread, pasta, fish and meat, boring foods, but I felt so much better after it

I do have a list of questions for the doctor tomorrow regarding diet, exercise and stress, I believe stress effects me a lot

welcome to the forum glad you found us. This is a great group they have helped me so much. The diet you are on sounds similar to what my GI put me on he called it a low residue diet. Stress is a major trigger for CD I know when I have a very stressful event my symptoms triple on me.

Sorry to hear that it took them so long to diagnose you i read somewhere that the average person with CD will have had it for 10 years before being diagnosised. Our health care system needs a major overhaul. I hope you get put on some good meds that seens you into remission.

Hey there Mitch. I'm glad you stumbled across our community and joined

That's really scary that you had such a close call It's always frustrating to hear stories of people who are repeatedly told, "it's nothing" or other iterations of that. It's far too common and makes me wonder just how many people out there have Crohn's and are suffering undiagnosed.

Anyway, please keep us updated as to how you're doing and let us know what medications they decide to put you on.

I wish you well.

Thanks for the kind words guys, I went to see a specialist today who has told me to start taking prednisolone 40mg and azathioprine 100mg, although I won't start them until next week...does this sound like a good start for me?

She also wants me to see a surgeon, to get his opinion on wether surgery is necessary, thought I think that will be after 2 weeks of taking the new drugs and also blood tests every 3 months

I hope that makes sense, Its all a little bit confusing and still sinking in a bit

It sounds like your gi is on the right path, but why do you have to wait till next week to start your meds?

I am glad that you are going to see a surgeon to evaluate your damage. PLease keep us posted.

I have to wait until next week as the specialist I saw couldn't give me a prescription.. So I had to book an appointment with my regular doctor who I can't get an appointment with until next Tuesday... That's the british health service, not as good as everyone thinks!

I will keep this updated, I think sharing my experiences will help me through it

Hello Mitch - make sure you do your own research on the medications - no better place than this forum! On Azathioprine you will need blood tests more often than every three months to start with.

All the best

I have had prednisolone before to help with severe hayfever and I didn't suffer from any of the side effects

The azathrioprine I'm a bit skeptical about it, the side effects seem a bit more serious especially the fact it can make abscesses worse worries me since I don't know mine have gone completely... However the specialist assured me the chances of things getting worse are slim

Azathioprine divides opinion. I started on 150mg 7 months ago - no problems - then contracted shingles so now reduced to 100mg and no side effects at all.

With the Aza blood tests - it is vital to have regular tests to start with - because if you are going to have a problem the bloods will identify it quickly

Yeah, now you mention it, I think she did say I would have regular blood tests initially

Hi and hope you get some good help here.

Hey Mitch, your story sounds similar to mine. I had surgery on my bowels due to ulceration and abscesses on the intestines and in the supporting tissues of the bowel as well as a bladder fistula.

It sounds scary but I feel better after having the surgery, as for the Azathioprine I'm sure you'll be fine as long as your monitored closely.

Personally I felt a bit failled and let down by my GI so make sure you get a good one! I fought and fought to get referred to Dr. Goh at the Queen Elizabeth hospital in B'ham. I'll be seeing him soon to review my meds.

I wish my surgeon was a qualified GI because he was brilliant!

Hi Mitch,

So glad you are with us!:dance:

Sorry to sound so dumb, but what does GI stand for?

The person I am currently seeing is dr eaden and so far she seems to know a lot

Thanks for the welcomes, its so nice to share this whole experience with people who know about it, no body really knows what I'm on about usually lol

No such thing as a dumb question!

GI stands for one of two things: Gastrointerologist-a doctor that specializes in the stomach, bowel, rectal area and liver.

We also say GI tract to refer to the digestive tract (gastrointestinal tract).

Ahhh that makes sense! Thankyou

UPDATE:

hi guys, it's been a while since I updated this!

I have started my medication, I was on 8x5mg of prednisolone and 2x50 azathriopine for my first week, I'm now half way through my second week on 7 prednisolone.. And have been told to reduce them by one a week until I'm off them and continue with the azathriopine as I am but have a blood test once a week to keep an eye on things.

I was a bit skeptical about these drugs at first, reading about the side effects.. But how I feel now compared to before, during my flare it was definitely the right choice to start taking them, I feel so much better... I have noticed feeling a bit depressed and having mood swings but my amazing family have been there to support me and know not to take anything I say or do too seriously haha

Unfortunatly I'm still not allowed to go the gym (boohoo) and the low residue diet is getting a bit annoying... But I feel so much better at the moment it's something I can live with... Finally everything seems to be going in the right direction!


Also currently beginning the process of purchasing my first home and taking my HGV driving license so stressful times ahead I'm sure, but I'm confident I'm going to get through it all... I'll be honest, I'm just happy everything is good at the moment, crohns isn't going to stop me that's for sure!

I am pleased to hear things are starting to improve for you hun, your mood swings could be down to the pred as this is a known side effect and a problem I had the last time I was on it. Also have your docs done any checks on your vitamin levels at all?

The only checks I've had are blood tests? I assume she would find everything she needs to from them as I've not been told about any further testing?

I'm also awaiting an appointment from a surgeon, to get his opinion on my situation... Not entirely sure why because I seem to be improving?

The vitamin levels are not part of standard testing so it would be worth asking the doc about this when you see them next. The appt with the surgeon could be to see if any type of procedure is required for the abscesses they found........

I just checked my blood test slips and they are checking vitamin levels for the first 4 tests.. then the other 4 they're not... Thanks for the replies by the way!

No worries hun Are the slips you have for upcoming tests? Does is state what specific levels are being tested?

First 4 weeks are:

B12 & folate
Liver function
Ferritin
Bone
Crp (c-reactive protein)
Urea & electrolytes
Full blood count
Esr


Following 4 tests (fortnightly)
Crp
Urea & electrolyte
Liver function
Full blood count
Esr

Good to see the B12 is on there among other things, when you get the results ask for the specific levels and check them here. With the Aza you may have been given a booklet to record blood results in?

I'm glad you're starting to feel better Mitch, that's great news.

:banana:

I hope you're in remission soon

I will do.. and no I've not been given an aza booklet? I'll research the internet for info

And thanks David! Things are getting better each day

So pleased things are going well for you Mitch.

Long may it continue!