Hello! newly diagnosed Crohn's

Hello everyone, my name is Amanda, I am 20 years old and have recently been diagnosed with Crohn's disease. My aunty has crohn's disease but I never once thought it was something I could have which meant a lot of tears and tantrums when I was told by the doctor of the diagnosis. I was immediately started on Asacol tablets but stopped taking these after a month as my consultant felt they weren't working. I am now on my last week of a 6 week weaning dose of Prednisolone which I have hated every second of taking. They made me feel like I had had 20 Vodkas and I have gained a considerable amount of weight which has really effected my confidence. At my last consultant appointment they mentioned starting me on Azathioprine after the steroids which I am a bit apprehensive about but I think that is due to not fully understanding what the tablets are doing, can anybody help with this? Although I have been given leaflets and information about Crohn's disease I still feel like I have a million questions which I do not know the answer to. Ironically I have been given the topic of Crohn's to research for a university assignment and have scared myself reading some of the information such as 50-80% of patients will eventually require surgery, how many of you have had surgery? This prospect scares me because although I don't particularly feel like I have had serious flare ups I don't fully understand what can lead to a patient needing surgery. I am due to see my consultant again on the 1st of Feb but always seems to come out of my appointments with more questions that what I went in with.

Hello and welcome to the forum

Azathioprine is known as an immunosuppressant, the way I have always understood it is that it stops the part of your immune system that causes your bowel to react the way it does and get inflammed. Because it is supressing your immune system you will be on regular blood tests so your liver function can be kept an eye on along with your blood counts, it can also be useful for docs to keep an eye on inflammation levels so they can get an idea on whether the med is settling the tum. Usually this would get introduced whilst still on the steroids because it can take up go 12 weeks to kick in so some overlap is required to keep the tum calm. Out of interest have you been put on a calcium supplement whilst on the pred? How are things tummy wise?

When it comes to surgery it is most commonly done to remove a stricture, this is where inflammation over time has caused scar tissue to build up in the bowel and this then start to cause a blockage. There can be other cases where meds just cannot calm the tum so surgery comes in to remove the active disease, everyone is different though so it does come down to the individual, some here have not required surgery at all and may never need to. I have had to have an op but this this is the only one in the 10 years since I was diagnosed which isn't bad going.

There is a lot of helpful info and support here so do have a good look around,it may be worth arming yourself with a pen and paper and writing down any questions that come to mind so when you next see the doc you can go through everything with them and do no leave until you are clear on everything you have been told.

Wishing you all the best and please keep us updated on how you get on.

AB
xx

Hi AJ092,

I've had surgery to which I now wear 3 bags, due another op very soon to reduce bags to 1, can't give you a lot of info on it as I've only just been diagnosed with Crohn's myself.
Sandra.

Hiya Amanda
and welcome

It's hard at first to understand this complex disease but in time you'll realise that your life isn't over and it's not that life threatening! Take that from a very old Crohnie!
This forum will provide you with tons of info, don't go trawling the net, just ask us, we're the experts!
In the meantime, we have a sub forum on Azathioprine aka Imuran, lots of success stories in there.
Try not to fret about surgery, I've never had any, but plenty on here have. Remember, everyone is different, we're all unique Crohnies!
Sometimes, things are so far gone, meds have been exhausted and the only option is surgery, or even emergency surgery including obstruction and perforation, but..............
don't even think about it!
Just you concentrate on feeling well and manageing your Crohn's, we're all here to help
good luck and any questions, just shout
Joan xxx

Thank you all for your replies!
I think I am getting myself hung up on the thought of surgery but that's just my personality! If there's a worst case scenario my brain will always focus on that haha!
I only got formally diagnosed in November and I don't think it has properly sunk in yet the complexity of the disease.
Do you have to have repeat colonoscopy's when diagnosed? I haven't been told of how they monitor the actual condition of your bowel and the process of both a sigmoidoscopy and colonoscopy were awful!
Yes AngryBird I think I should start writing all my questions down so I am not forgetful!
Have you's had to undergo more than one course of steroids? They have really knocked my confidence for some reason. Once I take them I feel like I am on another planet and the weight gain has totally changed my appearance, I can hardly recognise my own face with how much it has swollen.
Also I wanted to ask whether there are anything in particular I should eat or supplements to take, I know everyone has different triggers for their crohn's but I am just interested in what people take to maintain a healthy lifestyle
xxx

Steroid wise I have been on the Pred about 7 times now and up until the last time I had issues with acne and weight gain and what we call the 'moon' face, it can also effect your mood hich is what I had problems with the last time with snapping at the smallest thing and not sleeping well. Budesonide is also a steroid which is considered less invasive on the system but unfortunately this does not agree with me. Scope wise I think it is recommended to have these at least every 3 years so things inside can be kept an eye on, otherwise I think docs tend to monitor things base on how you are feeling and doing symptom wise which is why it is best to get in contact with them as soon as you notice any problems so any potential flare up can be caught early.

Diet wise it is best to keep a food diary so you can pinpoint problems foods, common problem foods tend to be things with pips and seeds, diary or too much diary and caffeine and high fat and high fibre foods do tend to be advised against. It is also worth getting your vitamin levels checked on a routine basis as it is common to have deficiences in this area and over the counter vitamins will not be at a high enough 'dosage' if you do have problems in this area.

I believe it's up to the individual gastro, my doc kept saying I didn't need another scope. My last one was 2005. I then had an MRI back in Nov and as a result I have to have a sigmoidoscopy next Wednesday, such fun!
Im gonna make sure I get one every few years from now on.
I think the doc can get a fair idea of any active inflammation from blood work, ie CRP, this is an inflammatory marker, 5-10 being fairly normal, anything higher may cause some concern. For example, when I was blocked and infected my CRP was 261 which is sky high and not good!
I was on Pred for nearly a year, it was hard but it healed me good and proper and I wouldn't hesitate going back on it. Yeah I puffed up like Jabba the Hutt, but it soon went away once I stopped it.
Budesonide is much milder and I take this reguarly if the pain gets too much.
A good tip whilst on steroids, lay off the salt and drink tons of water!
Once your Aza has kicked in, there should be no need for the Pred.
xxx

I took my last dose of Pred today on the weaning dose and slightly scared of what the future brings, AngryBird I have also read the azathioprine is introduced whilst on the steroids but to be totally honest there has been a complete lack of communication between my consultant at the hospital and my GP surgery! One doesn't know what the other half is doing, I even got an appointment to ask about the azathioprine and they still hadn't relieved a letter from the hospital and that was 3 weeks after my appointment with seeing the consultant. I had bloods taken yesterday at the GP but that appointment had been arranged from initially started the Asacol and I wasn't entirely sure if they still wanted them done but I thought no harm could be done from just getting them checked.
Yes AngryBird I shall start keeping a food diary so I can see if anything triggers a pain, I have found that spicy food sets me off so I need to stay away from that. Also I haven't been given a calcium supplement whilst on the Pred, should I have been?
Sorry if I ask a million questions its just nice to speak to people who have experience of this!
Amanda
Xxx

No worries hun, I always ask about a calcium supplement when folks are on steroids as this can help protect the bones from the potential long term effects steroids can have - it usually only can become an issue after long term use. So as of now you have now finished the Pred but still do not have a start date for the Aza?

No no start date for the Aza at the moment but when I went to my doctors to ask whether I should have been started on Aza during my Pred course she had no clue what was even happening with me because there had been no communication between the hospital and GP surgery and just assumed they would decide whether to start me on them when I am next seen in Feb x

On Monday call the clinic at the hospital where you saw the GI doc and demand that you are either given the number for the GI secretaries or be transferred through to them. Once done explain that you are now on no meds and that your GP has been given no information about your treatment and that they need to get something sorted now - perhaps even fax a letter to the GP explaining that you need to be started on the Aza (I had to do this last year when my med was changed and there was slow communication between the GP and the hospital). I personally do not like the thought of you being left with no treatment until Feb.

I think I'm having a flare, could it be down to not taking any steroids anymore? I was up all night with abdominal pain and the normal gassyness that I get. I don't know what to do about it with it being the weekend and not being able to see any GP's. I'm also feeling very weak and have pain in all my muscles

I would either contact NHS Direct to see if you can speak/see an out of hours doc or see if you can hold off until tomorrow to get an emergency appt with your GP. The pain you are getting is is the same that you have had before or is it very sharp and is it located in a specific area of your abdomen?

The pain in my stomach is the same pain as what I normally get but I have never experienced this weakness in my body before. Did you experience any side effects when stopping the prednisolone?

Nothing specific that I can recall, I wouldn't be surprised though if the weakness you have is down to stopping them along with having a rough night.